A Wonky Kind of Beautiful

to my sweet littlest big boy,

2011-12-02T02:22:00.001-05:00

i love you, little dude.

it's 2:30am, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

here it is. your fifth birthday. you weren't supposed to be here. you weren't really expected to make it this far.

but you've made it this far.

i couldn't be more proud.

i couldn't be more grateful.

this truly is something remarkable. for a lot of reasons.

sometimes i wonder how we've gotten this far. i guess i could, or should say it's God, and that would be right, so i don't want to leave Him out here. i want you to know that we couldn't have done any of this without His help and guidance and strength and grace... but i don't know... somehow, chalking it all up to God just kind of makes it all seem so trivial and simple. (or at least, that's how it feels at 2:30am.)

frankly, we've gotten this far with a lot of blood, sweat and tears. literally, blood, sweat and tears. it's true, i wouldn't trade any of this for the world, because it has made all of us who we are today. but, on the other hand...

ugh.

to say this milestone is a gift... i don't know. i almost feel like it whitewashes everything we've been through... sanitizes and sterilizes it all... when in reality, you've worked damn hard to get this far. and so have i. and so have countless docs and surgeons and nurses and other workers who are too numerous to mention. and to call it a gift... i'll be honest, dude, it's not really a gift i'd put on a wish list, if you know what i mean. no offence, because i know it's your life and i know it's the only life you've ever known, and i think that on a different journey you probably wouldn't be this beautiful, radiant light dancing along beside me.

but then i think back over the last five years... and i get tears in my eyes. you've come so far. no one could wrap their heads around the fact that you were eight days old before your PDA closed. eight days old. that just doesn't happen. and yet, there you were.

eight days old, and lying in Cardiac Critical Care at Sick Kids... so far from home, in a place that would become a second home so many times over the next five years.

i remember sitting next to you for hours on end. watching you, reading to you, talking with your nurses, listening to your docs, praying to God, staring at the monitors. but mostly, just watching you. it was really all i could do. i just sat there. right there, with you. holding your hand, crying over you, smiling at you when you opened your eyes, cheering you on in your little victories... the first time they took out your breathing tube, each line they could remove, each time your sats and/or heart rate and/or blood pressure stabilized... i feared for you with every challenge, too, though... each time your pressures increased to dangerous levels, each breath you struggled to take, each time your fever spiked, each time your sats bottomed out, each time you got a new line... i cried for what should have been when they gave you formula through a tube, when i had to put you down because you were destabilizing in my arms, when i wasn't allowed to touch you or speak to you or do anything but watch, because that would stimulate you too much and could have killed you...

oh, my sweet little man...

i'm lying here beside you tonight... this morning... whatever... and you're fast asleep, mouth open, arms up over your head... and i want to tickle your underpits. yes, it's bad, but sometimes i can't help myself. you just have the sweetest giggle i've ever heard. probably because i hear it in contrast to everything else.

probably because, so often lately, i don't hear it in contrast to everything else.

i just hear it. that sweet, musical, light and rambunctious giggle that bounces along with you wherever you go. it's just there. just like it is for any normal, little boy your age.

there's a lot in that giggle. there's victory and strength and determination and courage.

and there's nothing in that giggle. no pain or struggle or fear or sorrow. just light and joy and sheer, total happiness.

i joke with people that you run on batteries. you tell people you're a robot. "isn't that sweet," they say, because they think we're joking. they think you're using your imagination, and i'm exaggerating the way mothers do about their little boys who just go go go. because, really, no little boy runs on batteries. i joke about your slow-motion setting, and that maybe next time, dr c can give you a pacer with a mute button.

but that's just because dear me, child! you're loud!

but you know... i joke that you run on batteries, and you tell people you're a robot. if they only knew...

but then, somehow, the fact that they don't know, the fact that they can look at you and just see a normal boy, a normal, rambunctious, baby-of-the-family, goofball boy...

that's the gift, right there. that's the miracle. that's the milestone.

that you're normal. that you're turning five, and you have no idea how huge that is. that you're turning five, and you're having a birthday party on saturday. that you're turning five, and you're just, "i'm turning five!" and it doesn't knock you on your ass in shock and amazement that you've made it this far.

to you, your fifth birthday is just another reason for people to lavish you with attention and love and kisses, and that you're going to get presents and you got a cheque from Great-Grandma in the mail today...

which would be yesterday by now...

because it's 3:03am right now, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

it doesn't matter. you'll be five when you wake up. and you're going to wake up. and that's so miraculous.

because it's so normal.

i love you, dude. from here to one side of the galaxy to the other side and back, and then all over again. or, as you mumbled in your sleep a few minutes ago, "i love you more, to infinity and beyond."

love,
mommy
xoxoxoxoxoxoxoxoxo

ps - please, never say "righter." it's not a word. i just made it up because that's how i roll sometimes. i just don't want you to grow up thinking "righter" is a word. because it's not.

i heart our respirologist.

2011-11-08T22:27:00.000-05:00

she's so nice and really seems to be on the ball. i appreciate that.

so, yeah. we had respirology this morning. i'll admit, this appointment snuck up on me, but i'm really glad we went today. it was one of the quickest and most productive appointments we've had in a while. and we've had some "great" appointments lately! (and yes, i'm including the epically discouraging gastro visit the other week. even though i didn't like anything doc had to say, it's nice to have a plan and some direction. anyhoo...)

the quick stats, for those who want to know:
asher checked in at 16.1 kg (35.5 lbs, give or take), and 103.1 cm (3' 4")
BP was 94/48, HR was 86-87 bpm, and sats were 96-97%

the nurse told him she had to give his arm a hug, and then he turned to me and said, "mommy, she needs to do the blood thingy, right? with the thing around my arm?" she looked at him like he had just sprouted a second head - how does this kid know that?! i said, "he's got half a heart. he's kind of a pro at blood pressures." then he told her she had to put the light on his finger (for his sats). i wonder if she'd be surprised to know he does his own ECGs? haha!

then doc comes in. she sits down and we got to talking. other than over the last week or so when it's been more damp, asher hasn't really been coughing much. as in, almost never. but he has also been having some blue spells (he was notably pale at clinic, and has actually had several blue spells over the last week). he has been a little short of breath lately, too. which led me to comment,

"we've recently started back with gastro." i filled her in on asher's complicated (read: lengthy) GI history, with dysphagia, aspiration, severe chronic GERD (he's refluxing almost constantly now, even with prevacid twice a day), vagus nerve issues, and a possible malrotation in his bowel.

"is it possible," i asked, "that what you saw in his lungs on the CT scan was actually aspirated stomach contents?"

"it's possible," quoth she. and upon further discussion, she offered, "that would actually explain everything."

and so, gentle readers, i present to you her plan:

she's going to investigate. she is ordering a modified barium swallow study, to see where things go and how things work when asher swallows. for those of you who don't know what's involved in this study, asher will have to eat or drink something with barium in it (yum! you're jealous, admit it) as a special xray watches how his throat functions. he's had this test twice already, and both studies found the same thing: his throat muscles were very uncoordinated, resulting in an almost total lack of a swallow reflex. formula trickled down the back of his throat, pooled on top of his epiglottis (which was up, leaving his airway wide open), and then spilled down his esophagus. i think asher's swallow reflex is a bit more co-ordinated now, but hey, you never know.

the second test doc is ordering is some sort of nuclear swallow study. for this one, he will eat/drink something with a small amount of radiation in it. he will then undergo imaging at the time, at the half-hour mark, and the one hour mark. the idea is to see if asher is refluxing, how much, and where it's going (going back down to the stomach, spilling into his lungs, that sort of thing... which, now that i'm re-reading that sentence... ok, those are actually the only options, since he doesn't vomit. haha you know what i mean, though, and that's what really matters, and now i'm babbling, so anyhoo.............)

a bronchioscopy was mentioned, but she says that they would only go that route is there was the possibility of permanent damage to his lungs, and she didn't see any evidence of that on his CT from august, so i think we're going to be ok with "just" the swallow studies.

we are to return to resp clinic in six months, or after the swallow studies. whichever comes last. "unless he gets worse, in which case, keep the appointment," she advised.

so that was our day. :)

and now, since i have you here, i'd like to ask for a favour: please hold a couple of asher's buddies in the Light. B is in the hospital right now, and has been for some time. please pray for her, and pray for the team caring for her, and for her family. also, as i type this, sweet little H is in emerg. please pray/send vibes/cross crossables for these sweet little girls. thank-you.

you are Loved.

Asher requested this specifically

2011-10-24T21:34:00.000-04:00

yesterday, out of the blue, i started to sing this song to the kidley-winks. oh, wait! i think blithe was working on math homework. that's probably it. anyway... i started singing this, and the kidley-winks absolutely loved it! so now, asher has asked that i put it on his blog, so that you can enjoy it, too.

and, of course, once i found a clip of the song performed on The Muppet Show, i had to post that one. ;)

enjoy!

WOW!!! has it really been 2 months since i last posted?! CRAZY!!!!!

2011-10-19T12:02:00.002-04:00

i can't really explain why it's been so long since the last post. not a whole lot going on, i suppose. just regular, normal life stuff, i guess, and really, who wants to read about the days passing in their swirl and whirl and swing and song... that's what My Simple Life is for (please don't click that link yet, lest you see how long i have neglected that blog, too! HAHA!) ok, on to the post!..

like i said, life has been moving along fairly normally over the last couple months, which has been delightful, to be honest. sure, there's been some blips, but nothing that had me in a tizzy or running to the blogosphere for support, so i think it's ok. ;) so i'll give you a bit of a recap:

the kids started back at school, and they're enjoying it. blithe is in grade 4, learning french now, and loving every minute of it. her goal for this year is to get A+ in every subject, and to get into a special arts school in the area for next year. :) she has been really enjoying being on the music and drama teams at our church. she's really blossoming into a beautiful person, and i'm really proud of her.

bram has started grade 2, and seems to be doing fairly well. his reading is really improving, and he's really working hard on focusing and paying attention. his goal for this school year is to "get the exact same grades as last year." his sense of humour, his gentle spirit and love of life are really endearing and inspiring. and in case you're extremely curious, yes, he still has a mohawk. he lets me shave the sides, but not the mohawk itself, which he also won't let me spike. his hair is now almost as long as blithe's at the front! just another one of his little quirks which make him so lovable.

as for asher... well... he's back at school, in senior kindergarten this year. he has the same EA (educational assistant) as last year, which is wonderful. we've all really enjoyed working with her, and asher thinks she hung the moon, so we're all really pleased about that. asher has a different teacher this year, which admittedly caused me a bit of uneasiness initially, but after speaking with the principal and after seeing how asher is doing in school, my concerns are all gone and i'm really happy with how things have gone thus far.

with one exception, which actually has nothing to do with the school itself. asher has already missed about half of the school year due to chicken pox. not that he had them, but in an effort to keep him as healthy as possible, we want to minimize his exposure to these viruses and illnesses. so, home it was for the littlest man. and while i really enjoyed getting to spend so much time with only him, it is so sweet to send him to school, to let him enjoy time with other kids his age, to study butterfly life cycles and learn to read and paint and play at the water table and so on. i am so thrilled that he has this opportunity.

he, however, isn't always so thrilled. i know that, once he gets to school, he enjoys himself and has a great time, but he's really beginning to notice that he's different than other kids. he knows they don't have pacemakers. he knows they don't have EAs. he knows they go to gym. he knows they don't ride on a special bus. he knows. what he doesn't understand is that all of this is to protect him and keep him healthy and safe and give him the best possible school experience, and that we all work as hard as we can to give him as normal a life as possible. he doesn't understand the risks. or he does, and he doesn't like them, so he wants to pretend they don't exist. either way, it's hard to explain to him so that he accepts the situation for what it is. and what it is, is a lot of people who care deeply for him doing everything they can to give him a full, beautiful, Love-filled life. one day, he'll understand, and this, too, shall pass, and we'll get through. we're all aware of his PTSD and other emotional issues. but when he's crying in the mornings because he doesn't want to go to school, that's really tough on me, especially. but this morning's tears only lasted about 15 seconds, so i'm hopeful it's getting better. when he's been in school for a while, he does better, but since he's missed so much this year, it's rough. he'll adjust and get back into the swing of things, too, and that will help.

as for us as a family, we are now official members at the Y, and we have been enjoying this thoroughly. the four of us go swimming at least twice a week (we try for three, but it doesn't always work out), and we're loving that! we're all in better shape, we're happier, and the kids are all becoming increasingly comfortable in the water. monday afternoon, we went swimming together. blithe and bram put on life jackets and swam all over the pool. asher, who grabbed himself a floaty-belt (don't remember the real name for them LOL), clung to me most of the time. in fact, he's attached to me every second that he's in the pool. but on monday, he relaxed a little, and actually held onto my outstretched arm, put his feet out behind him, kicked, and "swam" while i walked around the shallow end. he's making so much progress in the water! i'm so proud of him!!

blithe is taking Creative Dance, bram is taking Tae Kwon Do, and they're both enrolled in swimming lessons. i had thought of putting asher in swimming lessons, too, until... we went swimming together... and he had an absense seizure on the stairs. while i'm holding him in the water, there isn't a whole lot of risk. but if no one is holding him, and he's in the water, and that happens... yeah. he's not in swimming lessons. :( but i figure, if we go often enough together, he'll learn on his own. he may never be the most fantastic swimmer, but he'll do well enough. his endurance is getting better now as a result of this activity, so who knows. the seizures don't happen very often, so maybe in a few months, once i'm a little more comfortable, i'll sign him up again. because, to be honest, it was his first seizure in several weeks, and it had been a while before that, so i'm probably being overly-careful right now. but this is a new situation for us, so i'm holding it as "caution" and not "paranoia." haha we'll just wait and see how this goes for now, and just have fun all together, like we're doing. :)

um, what else has been going on around here?... well... i had been working quite a bit over the last few weeks while my boss was away on vacation, so that was good. exhausting, but good. i also took some giant steps to pursue one of my dreams. i was the "make-up designer" (that's what it says in the program above my bio!! yes, carrie, i have an extra copy, if you're interested) for Tuesdays With Morrie, which was put on in London last week. it was a beautiful production, and every show got a standing ovation. it was an incredible experience, i can't really say enough about it, and i'm thrilled, honoured and humbled that i was given the opportunity to be a part of it.

ok, now that you're all caught up on the normal real-life stuff...

asher had two clinics yesterday: nephrology and gastroenterology. nephro was awesome! as for gastro... well... nephro was awesome!!! ok, it's not that gastro was terrible. just a bit discouraging. so i'll cover it first, and then we'll part on a renal high note, shall we? (wink)

so, we saw gastro because asher is still suffering from chronic GERD (aka reflux, aka heartburn). it is bad enough that he actually says it hurts and prays that God will "help me feel much better." yeah. he's on meds, but they are really only dealing with the heartburn itself and i'd rather address the cause of the GERD, to be honest. so, off we trekked to the clinic.

what began as "simple" GERD (in quotes because, well, it's asher we're talking about, so "simple" is relative) became GERD with chronic constipation. now, since asher has potty trained, i'll admit, i don't keep track of his BMs. but... when doc asked how often asher poops (hey, it's gastro. what do you expect?! haha!), i stopped and thought about it, and i realized... asher rarely poops. and i mean... maybe once every few weeks. and then i started thinking even more... that would explain why asher doesn't eat much... and probably why he doesn't gain weight very well... and doc reminded me that, if he's full of poop, everything gets backed up and there's nowhere for the stomach to put anything, and that causes more reflux. i reminded him of the vagus nerve damage asher had had, which i believed had healed. but he confirmed that the vagus nerve could still be a factor, since it enervates the esophagus, and if the esophagus isn't getting the signal to send things back down into the stomach, reflux will be a chronic problem.

and the longer i think about this... asher has had issues with his esophagus from the get-go. he had a swallow study done when he was 4 weeks old, just days after being discharged from SickKids the first time. they found a total lack of swallow reflex. sure, stuff went down, and he wasn't gagging very often, but we all watched as the formula (the thickest formula) just kind of spilled down his throat as opposed to being pushed and prodded by the muscles. i mentioned to him that resp had done a CT scan recently and they had found "stuff" in his lungs. this might be due to infections or something, granted, but it's also possible that asher's throat issues have not, in fact, cleared up as well as we'd thought and this is, in fact, evidence of aspiration. sigh...

he prescribed increasing asher's lansoprazole to twice daily, which should help, but again, doesn't address the cause of the GERD. he also recommended a laxative, which might help, as well. if everything is cleared out and keeps moving (the laxative would be an on-going thing), we hope to see a decrease in reflux and an increase in appetite. so, we go back in january for follow-up.

the other issue that came up was one that i have actually wondered about idly over the last couple months: celiac disease. doc seems to think it's a possibility, but he would like to investigate the other queries first before looking into a radical life-style change. which i appreciate. haha but i just might begin working some gluten-free foods into our diet over the next little while, in case this is the issue, and then the change won't be quite so dramatic.

all that being said... as we were walking to the desk to book a follow-up, doc asked, "has asher ever had a study done to see how things work in there?" i told him about the swallow study at four weeks, but there really hasn't been anything further since then. he thought for a moment, then said, "sometimes kids with congenital heart defects can also have a twist or malrotation in their bowel. when he got his G-tube, did they look for that?" i said, "not that i know of. no one said anything to me about it." he is going to be talking to Interventional Radiology (they're the ones who put in the GJ-tube and then changed it to a G) to see if they ever looked, or noticed anything. if they haven't, we're going to look into this right away.

so, what started as "simple" GERD has become something much bigger. and my heart hurts a little bit more today. :( i know it's not the end of the world, but things had been going so smoothly, and then to find out that he might have further issues just leaves me feeling sad. so prayers/vibes/crossed crossables would be very much appreciated.

and now for something completely different.

after gastro and a quick trip up to Tim Horton's (we hadn't eaten all day - stupid ultrasounds! haha), we saw nephro. asher's BP was low by all standards except nephro, because they like low BPs (81/55, anyone?). they say that's "perfect." ok... i'm going with it, since there really isn't much you can do to make his BP go up, so whatever. haha doc looked over the ultrasound from that morning and said, "wow! this is dramatically improved over last time! if you didn't know to look for anything, this would be taken as normal!" i picked myself up off the floor, resisted the urge to hug him, and said, "really?!?!" apparently, there is a small cyst in the left kidney, but it's been there all along, apparently, and hasn't changed size, so doc's not worried about it. in fact, i suspect he would have discharged us completely but for the UTI asher had a few months back, so we go back in a year. that's right, 2012!!!! i don't remember the last time i was so happy leaving an appointment!!

so, to recap, gastro was upsetting but eye-opening and at least we have a plan, and nephro was AWESOME!!!!

and now you're caught up.

have a wonderful day today! i'm so sorry about the length of this post. i'll try to post more frequently to avoid posts like this in the future. :S

you are Loved.

the long-awaited update...

2011-08-19T23:15:00.001-04:00

yeah... sorry that it's taken so long to update here... i don't really have a reason, other than work and um... well... i kinda forgot. {hangs head in shame}

but here's what i know you're dying to know... the details and results of the CT scan. sit a spell, gentle reader, and let me tell the tale.

on the morning of the scan, blithe and bram stayed home with their new babysitter, a really lovely girl i work. she's an absolute sweetheart, and the kids adored her. seriously, for the rest of the day, all i heard was "we had so much fun! can she come over again???" i'm not joking. i have since promised the kids and her that i will be calling her again.

it's nice, you know, this whole "having a babysitter for the kids" thing... i've never really had a regular sitter for them, which, i'll admit, has probably led to a lot of isolation for me over the last year, especially. now, just knowing that there is someone i can call to watch my kids... a weight has been lifted, let me tell you.

once she arrived, asher and i left for the hospital. en route, he said from the backseat, clear out of the blue, "mommy, when i was blue, i was a smurf." he decided that, since he's any blue sometimes anymore, he will be called "half-a-smurf." i love his sense of humour. the fact that he has been through so much, and can laugh and joke about it... to me, that demonstrates so much strength and resilience, and a spunky, slightly mischievous sense of humour. totally (albeit relatively) normal sense of humour for a 4-year-old boy.

we arrived at the hospital, and the nurse in the clinic was surprised by how co-operative he was for the blood pressure and sat check. (she had never met asher. haha) and off we went to the CT department.

to wait.

for about three hours.

with a 4-year-old boy.

who hadn't eaten since the night before. (they were going to anaesthetize him for the test.)

but he was a trooper, and only asked a couple times for something to eat. meanwhile, he played and chatted and read a book and was very well-behaved.

when his name was finally called, we headed back, and he chatted with the nurse, and pushed open the heavy doors into the lab. as soon as he saw the CT, however...

he ran behind a door and cried and refused to come out. it took a lot of coaxing, but in the end, i picked him up and laid him, literally kicking and screaming, on the table. i tried to comfort him, but that was difficult, and frankly, they needed him to scream like that to help breathe in the gas and get him to sleep. to be honest, i wanted to cry, too, but i couldn't...

anyway, the test only took a few minutes... but it felt like an hour. i wanted to vomit as M and i sat in the waiting room. then the nurse came out and said, "asher would like his soother. he's quite adamant about that." by the time i was allowed back to see him, he was wide awake, his sats and heart rate were "asher perfect" and he couldn't find his flip flops. he also thought that the bandage in his elbow was just something they gave him for being good, and he didn't want it taken off. apparently, he has never clued in that a cotton ball with tape is the sign of an IV. haha

ok, cut ahead to tuesday morning. the kidley-winks came with us for the follow-up with the respirologist, and our social worker met us in the clinic, as well. she had offered to come for support. it was great to have her there.

ok, ok, i'll get to the test results! sheesh!!!

so, doc came in and we talked for a minute, and then she said something that i had hoped she would say:

the obvious markers of plastic bronchitis were not present. in fact, the top portion of his lungs looked great! there was some yuckiness at the bottom of his lungs, but that doesn't lead her to plastic bronchitis. her words, "it's probably not plastic bronchitis."

ok, yes, it's not a definitely "no." but!!! it's not a definite "yes," either. so i'll take it!! {happy dance}

however, all this being said, there is a sadder development in asherland. he has started having accidents. not just once in a while, either. we're talking, 3 or more a day, and overnight. he told me that he doesn't remember how to go potty anymore. now, i know that's not entirely true... he does go running to the washroom sometimes... but not always. and he's too embarassed to tell anyone he's had an accident, so on top of being wet, he also ends up with terrible "diaper rash," for lack of a better term. so today, we ended up doing something i haven't done since early march.

we bought pull-ups. :(

he asked to wear them, and he even picked out which ones he wanted. there are moments when he really wants to wear them again, and moments when he doesn't... so we've reached a temporary arrangement, where he'll wear the pull-ups overnight, and during the day, he'll have to either run to the washroom or tell someone if he has an accident.

i hope i'm making the right decision here. i'm not entirely sure. i'm trying to do the right thing, but it's such a tough call... he's having accidents because he's upset from all the appointments and tests over the last couple months (yes, the accidents have been going on since june. :( ), but what if taking this step upsets him further?? i don't know... hopefully this is just a temporary set-back. i talked to him about it tonight. i reminded him that he's a big boy and he's been through a lot. i told him that having accidents isn't a sign that he's a baby or anything. it's just a sign that he's made it through some scary things, but he'll get through it and it'll be ok. he picked out the pull-up he wanted to wear tonight, and was so proud of himself when he put it on without me, so i'm hoping that's a good thing... and taking this one day at a time. tonight, this was the right decision. it might not be right for us tomorrow, but it is for tonight. we'll get through this.

the other kids are being so great with asher about all this, too. blithe helped him to reach the package of pull-ups off the shelf, and bram has been relating to asher all day with his sweet little, "i always had accidents when i was your age, too, asher."

meanwhile, please hold us in the Light. we're all elated about the CT results, so give thanks with us about that. but if you would continue to pray for emotional healing for asher, and patience, understanding and wisdom for me, that would be very much appreciated. thanks so much.

and one final thing: if you want to follow asher more closely, including "as it happens" quotes and antics and cuteness, but also "in the moment" prayer requests and thankfulness opportunities, please join his group on facebook, Blue Like Me.

wow, where do i even start?!

2011-08-08T17:15:00.000-04:00

it's been quite a month around here...

um...

we met with our CCAC case manager who was, in a word, the best CCAC case manager i've ever met! so nice, so helpful. she actually listened to me, and she offered supports and services that no other case manager i've ever met has offered. simply incredible! total gift!

she set us up with a social worker. actually the social worker was here this afternon. she is so nice. she's going to look into things like respite care for asher, a YMCA membership for the kids and me, some funding, and she offered to come with us next Tuesday for our respirology appointment. how wonderful is that?!

in fact, over the last month, it's just been one blessing after another. it seems like every day God shows up and dumps goodness onto us. sure, asher's still sick. his energy level is decreasing, and he's occasionally short of breath for no reason or with very little exertion. so yes, that sucks. but let me tell you about a couple other things that have come about that i would never believe if it weren't my life!!

i'm going on vacation. much needed, i might add. i'm going to florida for five days in february with some friends. and we're all leaving our kids at home. i'll admit, i was an emotional mess a week ago, but once i decided to do this, i haven't cried nearly as much, i've been able to cope with life's little challenges... just knowing that while all you ~~suckers~~ ~~poor saps~~ ~~walking popsicles~~ gentle readers who live north of the border or in other winter-prone locations are shovelling snow and shivering and complaining that you're out of marshmallows and how can you have hot chocolate without marshmallows this isn't cool for the love of everything holy and good this isn't cool!!!!!!!!!... i'll be in miami, sitting by the pool with a book and window shopping with the girls. i can't wait!!! i haven't been on vacation since before blithe came along, and before that it had been... wow... years. so yeah. i can't wait!!!!!!!!!!!!!!!!!!! {happy dance}
yesterday after church, i was chatting with a friend. i was telling her about our upcoming appointments and how nervous/scared i am... anyway, yesterday evening, her husband, one of the pastors at our church, saw that i had posted asking if anyone would care to join me on friday morning while asher's in having his CT. he, then, posted this on his profile: There is a mom in our church community who needs someone to sit with her at the hospital while her son undergoes tests this Firday- if you are available please contact Heather Heywood I know that she would appreciate it very much. i kid you not, within five minutes, a friend offered to join me and she will be the coffee wench and we shall drink coffee and i shall not worry about asher being put under to undergo a test that could very well lead us to yet another horrible diagnosis. anyway, the whole point of this is... community. it's such a gift. and as i said on FB yesterday, the support that the kids and i have received has been overwhelming and humbling and beautiful and the picture of grace and Love.

um, i can't really think of anything else going on in our world right now... blithe and i picked out her outfit for the first day of school, and let me tell you, this girl has some kinda style. also, we're trying to figure out where to go on a wish trip... so far, the choices are "wal-mart and mcdonalds," the island of sodor, take a train to toronto and take the subway to a hockey game, or disney world. so far, wal-mart and the hockey game are winning. HAHA

so that's the world according to asher... as told by me... for today, anyway. haha

you are Loved.

2011-08-03T14:14:00.000-04:00

after reading a particularly hilarious post on cake wrecks, asher has decided that he wants this song on his blog. enjoy!!

and seriously, go check out the cake wrecks post. after reading the first paragraph, before i'd even looked at a picture, i was laughing so hard my sides hurt and asher thought i was crying. it's just epic!!!!

it's the afternoon of our resp appointment...

2011-07-12T14:59:00.001-04:00

and here i sit, pretty sure of how i actually feel about it all.

i want to cry.

i know we needed to go. something isn't right and it needs to be investigated and what not...

so here's the deal:

it's not asthma.

it's not nothing.

apparently, i "said the right things" and doc believes asher has some kind of chronic bronchitis. the CT will give us a better idea what we're dealing with. then she added, depending on what the CT shows, we may need a bronchioscope. this would involve a camera in his airway and maybe some samples of whatever they find in there.

and for those who are wondering... plastic bronchitis was mentioned and discussed. for now she's calling it possible chronic bronchitis, and we're taking it all one step at a time, but not taking our time. she's definitely on top of this.

pre-admit clinic (when we'll meet with the anaesthetist and give consent) is at the end of july, and the CT is friday, august 12. then we see doc again in clinic on the 16th (that's a tuesday) to discuss what the scan showed.

she also sent home some specimen jars. even though, up until now, asher has been swallowing anything he coughs up, she wants samples of anything he does get out. she's not holding her breath for this, though, since she said that it's not uncommon for kids his age to swallow whatever comes up. even a cast (the little bits produced by PB) would more likely be vomitted out from excessive coughing, rather than to actually be projected with a couple coughs.

i'm not going to lie, i'm scared. i don't really know what i was hoping for today. nothing good could have come from this appointment. (and yes, "it's not respiratory" would not have been good news. because if it's not resp... then what is it?!?!) but "fortunately" it is respiratory.

and i want to cry.

because even "run of the mill" plain ol' chronic bronchitis isn't good for a heart kid... the interactions between the heart and lungs... ugh... let's just say, what happens in one affects the other, and of course, never in a good way...

in the meantime, she put asher on flovent, a steroid inhaler. we're trying it for a month, to see if it will help.

please pray that it helps.

ok, i'm gonna go now... the littlest man remembered that i promised to buy him something if he went to sleep last night and behaved at his appointment this morning. boo!!! haha

ps - for those who want to know: 100.8 cm tall (which explains why he ate as much as he did the other week!), and 15.7 kg. (for the non-metric readers: that's 39.6 inches and 34.6 lbs.) his sats were 95% (the highest they've been in a while!), heart rate was 85 (slightly higher than pacer settings, so that's nice), and BP was 105/53. he was also very active, a nice warm pink colour, and only slightly puffy around his eyes. he didn't cough once. haha but she was happy that he looked so good, because now she knows his norm.

pps - i like our doc. she's very nice, pleasant but takes it all very seriously. easy to talk to, and she really listens, and she's not taking asher for granted. yup, i think this will be very, very good.

ppps - please hold us in the Light, especially me. the last few weeks have been really rough for me, and all of this now isn't helping. i just feel a little sad and overwhelmed and i don't want to lose my baby but for the life of me i can't shake this feeling that we've now started that slow decent toward the end... basically, i don't have a whole lot of hope right now. i'm weepy and tired and scared and lonely, and all of this compounded by the several other stressors i have right now, including much needed repairs on my truck and house, and the lack of funds for either. sorry, just needed to vent... thanks for "listening."

it's the morning of our resp appointment...

2011-07-12T07:19:00.000-04:00

and here i sit, not sure how i actually feel about it all.

we're adding another specialist today. asher's been wheezing for a while now, he has a nasty wet and crackly cough, his sats are dropping. nothing much shows up on x-ray, but maybe the CT scan will show something when the time comes.

it's all so strange... it almost feels pointless, going to see another doctor, hoping they'll fix my baby, since they can't. sure, maybe they can fix his resp issues...

but they can't fix him.

because

"given that the fontan is palliative, he's doing as well as can be expected."

yes, i know that, technically, that is all good news. he's doing as well as can be expected. hooray!! but...

at the same time...

there's that p word.

why has that comment hit me so hard? i mean, it's completely true. the fontan is palliative. they can't fix asher's heart, but they can make it keep beating for a little while longer. and that's what they've done. but it's not a repair, and it's not permanent. his circulation can't last like this.

it is the very truth of the statement that hurts. i suspect i'd let myself believe that maybe, just maybe, asher will grow up. i mean, he's made it through so much already, right? he should have died so many times by now, and yet here he is, right? maybe he'll beat the odds and he'll finish high school and college and he'll get married and have kids and have a great career and he'll live to be 107.

given that the fontan is palliative, he's doing as well as can be expected.

i can almost hear the clock ticking.

this morning, like the last few weeks, i've been wrestling with the seeming futility of all of this. why bother taking him to emerge? why bother seeing cardio? why bother starting with a new specialist? why bother with tests? if this is the best he's gonna do, then what's the point?!?!

but...

what if these docs can give him just a few more years? then again, what if he still has a few more years, and they can give him ten more years? what if they can do something that will allow him to not only start high school, but to finish high school??

what a horrible thing it is to hope against hope that your child will live long enough to go to high school.

and yet, this is my reality.

there's no denying it: HLHS is a death sentence. given asher's extensive list of diagnoses, and his history, and his present, the odds aren't in his favour for a long life. he's not actively dying right now, thank God. but there are the little things that pop up and add up and take their toll on him...

and on me...

and sometimes, it's just a little much.

and sometimes, it's not nearly enough.

well, our streak has come to an end... but now we get to start over! tomorrow is Day 1. ;)

2011-06-27T12:28:00.002-04:00

that's right, folks, it's been a delightful 13 months, but as they say, all good things must end...

asher was admitted to hospital last night.

now, before you panic or get upset or worry (haha!!), it was just for observation and we've already been discharged, so it's all good. {thumbs up} here's the deets:

yesterday morning at church, asher was... um... how shall i put this... asher was being asher-ish. which actually says quite a bit for those who have been around for a long time. haha but for those who haven't...

asher spent the morning trying on all sorts of funky shades of blue, and a bit of grey thrown in for fun. oh, sure, he had his pink moments, but for the most part, he was blue and/or grey. he was also dizzy and lightheaded and kept saying that his "ears feel like day have cottonballs in dem." i'm pretty sure there were a few times that his ears were full of that rushing sound, because there were a few times that i'd look at him and he just wasn't focusing on anything and he wouldn't respond when i spoke to him. (i know what some of you might be thinking, but i doubt it was seizures. i might suspect that if he hadn't had the other symptoms, but given everything altogether, i'm going with the rushing sound.) so i called our paeds, hoping i was being paranoid, and whether i was or not, she said that he should be checked out when we get home. so, it wasn't urgent. yes, he needed to be seen, but not right that minute or anything.

anyway, we got home, ed picked up blithe and bram, and asher and i headed off to emerg. his triage vitals: HR 81, sats 93%, BP was 100/60-ish... his norm, anyway. but those sats... ugh... his normal is - believe it or not - real normal, sitting between 96 and 98%. lately, though, he's been 92 to 96%. not a huge drop, but i don't like it. i'm actually kind of glad we'll be seeing respirology. speaking of which... oh, wait, i'll get to that...

ok, so they decided, based on the number of blue spells etc that asher should be admitted. just overnight, and just for observation. no biggie. still sucks, but it's ok. close to home, just for one night, and nothing major planned. just a regular admission.

overnight, he was good. no major episodes... some hints that he might change colour, but nothing substantial or concerning, really.

there was a little bit of excitement this morning, though. ash and i were going to head down to the playroom, so i put a sat probe on him (doctor's orders)... he was a delightful 93%... and his heart rate was 74. i know what you're thinking: isn't he set at 80?!

yup.

so he had an ecg and yup, 74 to 77 bpm... paced. wha-?! but dr b sent a copy of the report (from a regular ecg and a 10-second test) to cardio in london. cardio said that it looks like the pacemaker is working well and they're not concerned. "so, it's ok for him to be sitting with a heart rate in the 70s?" apparently, it is. {shrug}

a couple other points of interest: asher's chest xray from last night looks a little bit like he might have RSV. again, wha-?! but this is asher, and even though he's a little old for that (and it's summer!!), that might be what's going on. either way...

respirology was consulted. they are going to rush him in (resp doc is off during the first week in july. she's going to make sure he is seen during the second week in july). she is also booking him for a lung CT. apparently, there's a 1-month wait for that test, so if she books it now, it will get done as quickly as possible. and this way, if asher doesn't need that test, it can just be cancelled and no harm done.

in the end, we came home around 11 this morning.

it's good to be home, i gotta say. yes, it sucks that his streak has come to an end, but it was great while it lasted, and it was just for an overnight admit for observation, at our local hospital instead of children's or sick kids, so i'm happy. :)

besides, i didn't have to cook! can't complain about that, if you ask me! {wink}

sometimes you just gotta shake your head, shrug and say, "whatever!"

2011-06-21T09:18:00.001-04:00

... and then maybe laugh a little bit... because, you know... what else can you do, really?

so this morning, the boys got up before the alarm and came downstairs. asher stole my muffin, but bram asked nicely and got one from the kitchen. then i looked at the clock and realized the alarm hadn't gone off, and so i sent them back upstairs. bram declares that he's going to leave his muffin downstairs because "it's dirty" (???) so he doesn't want to eat it in his room.

asher, who has, on occasion, been known to sneak food, also gets up and starts to make his way to the stairs. i looked and noticed that he had something in his hand, though i couldn't tell what it was. suspecting that it might be another muffin, i ask, "what's that in your hand, dude?" (trying to sound all innocent and naively curious so as not to tempt him to lie).

he looks at me with "duh!" written all over his face and says, "a rock." and he showed me, and yup. it's a rock. because you know, what else would a 4-year-old boy be holding in the living room at 7:15 in the morning??? (see the title of this post.)

ok, all the cuteness and fun asher-ness aside... we need to move on to the other kind of asher-ness... and sigh...

so, yesterday, i kept asher home from school. i'm still trying to figure out how he managed to open his eyes when he woke up; his eyelids were just. that. puffy. he was also a weird colour (see definition of "asher pink" under "A Lexicon of Asher" on the sidebar), and he was mottled all over. not pretty. then, when i was getting him dressed, he was having trouble balancing and his eyes weren't focused on anything. i says, "how ya feelin', dude?" he answers,

"dizzy."

cue requisite questions re cotton balls in ears and so forth. the answer was no to all of that, but he is clearly dizzy.

so i stopped making his lunch and called the school to let them know that asher would not be going to school.

not to mention, he still has that nasty cough, which emerg determined is viral bronchitis, so really, should he be at school to potentially pass that around? i don't really think so. anyway...

asher wanted his dad, so i dropped him off and headed out to run a couple errands which needed to be... um... run?? (why does that not sound right?... wow, the title of this post works on so many levels! who knew?!) as i was a-walking, i bumped into the secretary from our paed's office. we got to chatting, and she asked how asher was doing... so i naively told her. "k, i'll book him for this afternoon."

what?? no!! i was just making chit-chat!! aw, man! i really didn't think he needed to be seen... but, i booked the appointment, anyway. (post title)

cut to 4:50pm. we're at our appointment.

doc listens to asher's lungs and... yeah... they're still wet and crackly sounding (despite the chest xray that looked clear last week), and he's wheezing. still. this has all be going on for about a month, now, and it's not getting better (which viral bronch would do on its own by now). so doc muses, "maybe it's something else... either way, i'm not comfortable treating this wheeze, so i'm gonna send him to respirology. they can deal with that wheeze."

(ventalin causes the patient's heart rate to go up. way up. so, um... yeah... respirology, it is.)

then doc and i were discussing the reflux issue, as well. see, asher used to have severe GERD. it led to failure to thrive (FTT - poor thing was so malnourished... hence the GJ-tube) and could have killed him a number of times due to his open airway. but! his vagus nerve healed and his heart function improved and so the reflux went away.

but it's back now. with a vengeance. almost seems to be trying to make up for lost time. asher had been on ranitidine (zantac?) for a while, but it stopped working (which can happen, and actually happened when he was a baby), so doc put him on lansoprazole (prevacid fastabs). in the meantime, however, we should probably figure out why he's refluxing again, since cardio has ruled out the heart as the cause (see this post if you don't understand the correlation). once we figure that out, we can treat it all more effectively.

cardio mentioned last week that we should probably see gastro again about all the reflux, but i was so thrown by her choice of words that i didn't catch if she would be referring us or if paeds was supposed to. so i mentioned this to doc yesterday, so she's going to send in the referral.

and so it goes. puffy eyes and chit-chat turn into two more specialists for the littlest man. this will bring our count up to 10:

paediatrics
cardio (london)
cardio (toronto)
heart surgery
pacemaker tech (not a doc, but specializes in the machine that makes asher's heart beat, so she counts, haha)
nephrology
neurology
immunology
gastroenterology
respirology

sure, there are kids out there with longer lists. but then again... my other kids only have 1 doc. so nine docs and a tech is a lot. on the other hand... um... asher's alive, so i'm gonna count this as a good thing. :)

so there you have it. yesterday. quite a day, if you ask me.

don't know why it's taken so long to update here...

2011-06-20T07:43:00.002-04:00

maybe because it's all just so "meh"... not bad, per se... more like... um... wow. "meh" really is the best word. go ahead, say it out loud. you'll understand when you hear it.

on tuesday, asher stayed home from school because he wasn't 100%. other than a cough he's had for the last few weeks (yes, he still has it, and it's wet and gross sounding and it just seems to be getting worse, actually), i couldn't quite put my finger on what was wrong... he was just off... his colour wasn't right, his mood wasn't right, he slept in, i don't know... a bunch of little things that added up to me keeping him home so i could keep an eye on him.

we had to get some milk and eggs, so once blithe and bram were on the school bus, asher climbed into the stroller and we headed off to the store.

we decided to get a quick little bite to eat from the coffee shop first, though. he picked out his muffin and headed over to the table. and sat down. quietly. with his head on the table.

i got my coffee and our muffins and sat down with the littlest man. we munched, we chatted, we people-watched, we turned blue... well, ok, he turned blue. i watched.

and called our paediatrician.

and off we went to her office.

where she assessed him.

(the deets: BP was 100/50, which is weird for him; liver was large and 3 cm down; and his colour was "asher pink" to grey with blue undertones. yeah. lungs were wet and crackly, and he had a murmur.)

see, since he's been refluxing almost constantly for the last several weeks, one of the concerns was the possibility that he has been aspirating (stomach content/juices going into his lungs). granted, it seems somewhat unlikely, since his throat has been working so well for so long now, but he has quite the history with this sort of thing, so it needed to be investigated.

so, she sent us to emerg for sats, chest xray and ecg.

which asher did himself. no, seriously. he stuck out his finger for the sat probe (92% in triage, up to 95% before we left), attached his leads for the ecg (yes, he knows where they all go), and in xray, he hopped up onto the stool, arranged the lead apron, sat tall and still and took a deep breath without being told, then turned sideways and put his arms up for the second picture. all without being told. no one could believe he was doing all that. i said, "when you see his pictures, you'll understand how he knows all this." and they did. it's not often our local hospital sees a 4-yo with that much extra hardware in their chest.

Asher and Farkie Malarkie, both gowned and waiting for x-ray.

in the end, it was decided that he probably had "viral bronchitis" and we were sent home. a long day... for nothing, basically. :S

and speaking of long days... we had cardio on thursday.

it was the usual: pacemaker, ecg, echo, doc.

everything was uneventful. asher was paced throughout the appointment, and when they tested his heart during the pacer check (basically, she turned it off for a moment), his own heart rate was 60. that was his active heart rate, after running around and playing for half an hour. yeah. no wonder he was pale!! and no wonder he has a pacemaker! haha

k, so the pacemaker is working properly (no comment) and still has 8 years left in the battery. he's also about 75% paced (75% of his heart beats are initiated by the pacer).

now, because i know some of you are wondering... here are his vitals, etc:

BP was 117/65 in his left leg, and 99/64 in right arm.
sats were 94 to 95%. (asher's norm is 96 to 98, so this is lower than usual but only marginally so.)
HR was 80 to 86, paced.
liver was still low (3 cm) and enlarged.
no mention of a murmur.

when doc came in, she said that he's doing "ok" right now. she also said that, since he's had his "fontan palliation" (anyone else wanna vomit at that term??? i know it's true, but she usually just calls it the fontan. {wave of nausea}), as long as function is good and the pacer is working, he'll be "ok" and "i looked at his echo and everything seems to be fine, no coarc or leaking and function is good. basically," quoth she, "he's doing as well as we can expect at this point. but you know, the fontan is palliative. but any problems that come up will be slow to develop, which will give us some time to deal with them. but right now, he's doing as well as we can hope for at this point."

k, all of that is true.

and all of that is good news.

but um... it's just that... usually... she puts it all very positively. "he's had the fontan, therefore he is doing very well. i'm happy with him. we'll see you in 6 months." in all the time i've known her, i've never heard her use the word "palliation" or say "as well as we can expect"... i don't know... yes, it's good news... and yes, all those phrases and words are true...

maybe it's just that... it's one thing to know those things, and it's another thing entirely to hear the doc say them...

and when you're trying to ignore your child's odds, the last things you want to hear are the words "palliation" and "as well as we can expect."

i'm trying not to get too upset by it. sure, it was pretty rough on thursday. but i handed it over to God and i'm now feeling a lot better... just holding the truth of it all, instead of the pain that truth causes...

but some days i feel like the clock is ticking, you know? and thursday was one of those days, i guess. that's probably why it's taken me so long to post any of this... but on the other hand, i know it's all true, and really, he is doing "as well as we can expect at this point," so i cling to that truth, and if/when anything else comes up, we'll deal with it then. meanwhile, i'll enjoy that asher has spent the last week eating (a delightful change!) and even in the heat, he's doing "as well as we can expect."

maybe it's just that i'm sick of docs and i'm sick of cardio and i'm sick of tests and i'm sick of hospitals. and i'm sick of asher being so comfortable with it and i'm sick of asher doing his own ecg's and i'm sick of asher sitting so nicely for xrays and i'm sick of seeing asher lie still for echoes and i'm sick of seeing him with leads and a blood pressure cuff.

it's weird... i'm not actually feeling as down as this post seems to imply. i'm just really, really tired of heart stuff, you know? and really, it was a "nothing" week, even though a bunch of stuff happened... so what if he's back to "asher pink" and not actual pink lately. i've seen him worse colours, to be honest. it's the humidity that's doing it, i'm sure, since, frankly, i don't like the humidity, either, and i wilt just a little bit during a heat wave, too, so really, i don't think it's really anything to worry about. i don't like his colour, but he's doing ok, so i'll just let his mood be the deciding factor. if he's his usual spunky self, then i won't worry.

and lately, he's his usual spunky self. so i'm not worried.

blogger asher!! :)

2011-06-14T19:31:00.001-04:00

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in his own words...

2011-06-10T19:24:00.000-04:00

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sorry for the absence...

2011-06-01T10:56:00.000-04:00

but believe me, you didn't really miss anything. haha

we see cardiology on the 16th for a complete check-up. echo, ecg, pacemaker check, and a holter. i'll fill you in on all of that when the time comes.

as for asher...

he's fine. haha

no, seriously. he's fine. if you watched him, you'd swear nothing happened. he bounced back from this latest episode in no time at all.

physically, that is.

and even emotionally, too, for the most part. PTSD only came out for a little while, and only in a small degree: some scary dreams and disturbed sleep for a week or so, and he's still insisting he's a "little boy" and not a big boy, even when he does distinctly "big boy" things. he did regress a little bit and is back to loving his sucky and "needing" it most of the time, and ok, i'll admit, i was humouring him (read: spoiling him) and letting him have it. but like i told a friend recently, "if he had been breastfed, he'd likely still be nursing, since i believe in natural weaning, and this is a form of stress relief for him, and God knows asher has more than his fair share of stress, so i'm letting him use it for now." i have been taking it away from him for a few hours every day, hiding it in high places so he can't find it and grab it back. haha

but in the meantime, asher's been at home for the last couple weeks. and it's been wonderful! :) we've been baking and gardening and shopping and napping and generally hanging out. and i gotta say,

i've loved every second of it.

maybe it's selfish on my part, but he's just such a delightful little boy! he's so much fun, and he's hilarious, and he's so smart and playful and bright... the last couple weeks have been an endless stream of hugs and kisses and giggles. probably the best couple weeks i've ever had with him. ever.

we were out grocery shopping one day last week, and he was so funny. i don't even remember what he did, but i looked at him and thought, "wow! i'd forgotten how magical 4-year old boys are!" and then it hit me: i never really got to enjoy bram at this age, because asher was in such rough shape. so i was saddened by that. and then i thought, "well, i know a 4-year old boy is very different than a 4-year old girl..." and then i realized that, when blithe was 4, i was dealing with a rough pregnancy, then asher's diagnosis, and we spent most of the next couple years in hospitals and clinics with asher... so i never really got to enjoy blithe as much at this age as i would have liked to, either.

so that's been a bit of a downer for me.

but! i get to enjoy this age now, and it's truly wonderful. not just for the delights of the age, but also... because i have a 4-year-old boy. and that is magical and delightful and miraculous and wondrous and beautiful. when i think back over the last 4.5 years, i am truly amazed and grateful that he's still here, bringing so much light and happiness into our lives. even when the kids are all fighting, and asher's crying because bram grabbed back the toy that asher had taken from him and "brammy doesn't like me anymore!" it's still beautiful.

we've spent the last couple days in the backyard working in the garden (asher was only outside for little bits at a time, due to the humidity). asher had gotten some carrot seeds at mcdonald's (?!?!) the other day, and he was so anxious to plant them... which meant... i had to go find the garden. haha so i've spent two days pulling out weeds and grass, discovering things like onions and wheat (thank-you, birdies), and getting him to "help" me (mostly him pointing to weeds for me to pull and me telling him to watch where he steps because there's a plant right next to your foot no asher the other foot sigh you just stepped on the onion no worries it'll be ok). we've enjoyed the cardinal that lives around here, and asher had fun showing it to the "callapidder" he found and named elmo (surprised? haha). it's been so cute watching him with "elmo callapidder" and "mr squirmy" (a worm... or more accurately, several worms, but when you're 4 they all look alike, i think. haha). "don't be shy, elmo, it's me, ashie!" and "here's some dirt for you, mr squirmy, isn't that nice? now you can eat that all up!" see? adorable. {blissful sigh}

last night, there was a muffin sitting, untouched, on the coffee table. i asked asher to put it back with the other muffins, on top of the freezer. "but i don't want to," he said, and started to walk off. "asher, please put it away now or you'll get a time out and then you'll do it." "ok, mommy!" he said, with a smile (????). he grabbed the muffin and ran off to the kitchen. he came back and said, "ok, mommy, i put da muffin away." somewhat skeptical, i asked, "where did you put it, sweetie?" "in da fridge." ok, so it's not exactly where i'd told him, and i showed him where it was supposed to go, but he was just so cute!!!

i think it's safe to say that i've fallen in love with that littlest man of mine all over again.

now, all this being said about how much fun i've had with him at home for the last couple of weeks....

asher's back at school today. he said he didn't want to go back. in fact, he'd been saying that for a few days. and even this morning, it was, "i don't want to get dressed! i don't want to go to school!" but i got him dressed (in the cutest little outfit! ugh! he's so adorable it's sickening!! haha). got his lunch all packed (thank-you, Blithe, for your help!), and we set off for the bus stops. asher was complaining and complaining... until his bus turned the corner onto our street. suddenly it was, "MY BUS!!!!" and he literally ran all the way to the bus and climbed on and jumped into his seat and only looked back long enough to blow me a kiss good-bye before the bus pulled away. all together now: aaawwwwwww!!!!!!! yup, that's right. he's just. that. adorable.

so, here i sit, alone, for the first time in a couple weeks, in a quiet house, with my laptop and coffee... and i gotta say, as much as i miss that littlest man of mine, it's nice to have some quiet. {wink} and so now, if you don't mind, i'm gonna go outside with my journal and a book and my coffee, and enjoy the first perfectly, beautifully sunny and warm but not humid day we've had all week.

ps - a little boy from our church, little Joshie, was diagnosed with leukemia last week. please hold him and his family in the Light. he's getting his port today, and docs and mom are hopeful that he'll be ready to go home later this week. please pray for them on the long journey ahead of them.

and the post i started yesterday was going to be so different...

2011-05-18T22:10:00.002-04:00

this afternoon, i was taking a shower, getting ready for work, when the phone rang. i let it go to voicemail.

i shouldn't have.

i should have jumped out of the shower and run to the phone and answered it immediately.

but i didn't.

i let it go to voicemail.

i shouldn't have.

when i checked the message a couple minutes later, it was the secretary from the school.

she needed me to call her back immediately. her concern was obvious by the urgency in her voice. i knew right away that something was very, very wrong with asher.

i called her back and here's what she said,

"hi, heather... we have asher... he's in the office... the paramedics are here now... can you meet them at the hospital?"

"what what what what what what what what what what what what what what what what?!?!?!?!?!?!?!"

"he was... lethargic... they're leaving now... can you meet them at the hospital???"

"YES!!!! i'll be right there!!!!!"

i called asher's dad to see if he'd talked to them yet, and to ask him for a ride to the hospital (i was literally shaking at this point, so i didn't think driving would be the best idea...) while i was waiting for him, i updated FB, with

PLEASE PRAY!!!! ASHER IS BEING RUSHED TO THE HOSPITAL. THE PARAMEDICS ARE AT THE SCHOOL RIGHT NOW. I'M ON MY WAY TO MEET THEM AT ST THOMAS EMERG. PLEASE PLEASE PRAY. ALL I KNOW IS THAT HE'S VERY LETHARGIC.

see those caps?? that's because i was terrified.

i won't give you the exact play-by-play of the afternoon, but here's what i gathered from the paramedic, our paediatrician, and asher himself:

by this afternoon, asher didn't have an appetite. so they brought him down to the office to see if he would eat there (sometimes he just gets distracted by the other kids, and the school has been informed of his FTT-ish tendencies and that he must eat his whole lunch). he didn't want to eat much.

then they noticed that, in addition to the loss of appetite, he was lethargic. and his colour wasn't right. so they started to get concerned...

when suddenly he became

flushed.

very sweaty.

unable to keep his eyes open.

unresponsive.

all he could hear was a rushing sound and his heart pounding. this is why he was unresponsive: he couldn't hear anyone speaking to him! he said that he was very, very dizzy, and his heart was burning and felt like someone was pushing on his chest, and he was very scared.

and when the paramedics arrived, his heart rate had dropped to 40bpm (beats per minute), but picked back up to 80 within a few beats, once the pacemaker kicked in. and the doc's words: "the paramedics said he looked awful when they got there."

(side note: this isn't really indicative of a problem with the pacemaker, which i know we're all thinking... because i thought it, too, initially. but if the pacemaker has been working for a while, it will switch off for a moment, just to see what the heart will do without it. if the heart cannot sustain the 80bpm on its own, the pacer kicks in again. this is what happened. the pacer tested the heart, his heart rate dropped by half, and the pacemaker brought it back up again. back to the story now...)

by the time we all met up at the hospital, asher was fine. his heart rate was sitting at 80, his colour was fine, energy and mood were normal, and he was smiling and chatting with the nurses when i walked in. his blood pressure was 117/75, his sats were 93 to 95% (his norm is 96 to 98%, so that's not too bad). the chest x-ray and ecg were unremarkable (pacer spike was visible on the ecg); bloodwork and urine were fine. right now, we're just waiting for the blood culture results, but those will be negative, too... other than some mottling on his back, he is showing no signs of sepsis or anything else nasty and bacterial.

so they sent us home.

i talked to our amazing paeds dr b this evening, and she's going to call neuro tomorrow. she wonders if perhaps this was some strange sort of seizure? asher did have an absence seizure as we were leaving the hospital tonight, so it's possible... and if it's not a seizure, at least we would know to focus on the heart if (yes, i'm saying "if," not "when") this happens again.

right now, i don't quite know what i'm feeling. relief, yes, absolutely. what happened today could have been very, very bad. (for those of you who saw my FB status this evening, there's a reason i used the word "infarc" in a text... it's because that's likely what very nearly happened... and if you don't know what an "infarc" is... you don't want to know, so don't ask.) but considering what i was writing yesterday... about how stable he is... which, yes, in the bigger picture, he's been worse... but... i think there's some fear and shock mixed in right now, since this happened so quickly, right out of the blue... honestly, yesterday he was fine.

completely fine.

a little heartburn, and tired during the heat wave last week, but other than that, completely fine.

and then today, i'm flying down the street to emerg because my baby almost had a heart attack at school. again.

well. he's not going to school tomorrow. and we'll see about friday. i'm not sure if this is for his benefit or my own, but i just don't feel comfortable sending him to school right now. i mean, he's acting fine. honestly, he's back to his usual self. which is lovely, don't get me wrong. but...

i'm rattled.

i'll get over this. i will. who knows, by morning, i'll probably feel better and calmer and by 10:00 i'll be wondering why i thought he couldn't go to school! haha but right now...

either way, i'm going to look at this as a couple of days with my littlest man, just me and him, hanging out. :) we'll play some monopoly jr, some candy matching game, maybe i'll get him to help me with some laundry, maybe we'll do some colouring... a fun time, just him and me. :) that's how i'm going to look at this right now. just nice, calm down-time with my littlest man. <3

and now if you'll excuse me, i'm going to go make myself some tea and relax. maybe some journaling, maybe some reading, maybe some praying... maybe some tetris... haha

right now he's doing fine. he and blithe are having a little sleepover in her room. his colour was a little off at bedtime, but it was just some reflux. he said his chest and throat were burning, so i gave him some ranitidine. tomorrow i might get him some tums or something, to tide him over between doses of the med... good thing i work in a drug store, eh? {wink}

anyway, there you go. the day in review. now i'm going to drink my tea, play some tetris, maybe read up on how to be fabulous, journal a little bit more, and go to bed.

thanks so much for all the prayers, vibes and crossed crossables this afternoon. they were needed and much appreciated.

i heart laundry.

2011-05-16T13:35:00.000-04:00

ok, not really. at least, not usually. but today,

i love laundry.

so, i'm upstairs, folding my way through a GIANT pile of clean clothes, and i pull out a pair of underwear. i check the size, and it's asher's.

and i smiled.

because just two months ago, he was still in pull-ups.

and he's not anymore.

{smile}

and then, i continued folding the laundry, and i suddenly realized something:

i'm folding asher's laundry.

i'm folding asher's laundry.

my littlest man produces oodles and oodles of laundry.

because he's still here.

yup. i heart laundry.

my littlest man is an artist!!!!

2011-05-06T16:46:00.000-04:00

asher gave me my mother's day gift this afternoon. have you ever seen anything cuter????

(and just ignore the mess behind it...)

sshhh... don't tell Murphy, but...

2011-05-04T23:32:00.000-04:00

at the end of this month...

it will be...

ONE WHOLE YEAR SINCE ASHER'S LAST ADMISSION!!!!!!!!!!!!!!!!!!!!!!!

yes, you read that right.

one.

whole.

year.

granted, it's been a year full of appointments and scares and trips to emerg and pacer problems and almost heart attacks and near admits...

but no admissions.

none.

in almost a year.

this, folks, just doesn't happen in asherland.

well, it didn't happen in asherland.

but apparently, it does now!!!!!!!!!!

just sayin'. ;)

i'll post my thoughts and feelings about this later, but it's 11:30 and frankly, i'm tired, so this will just have to do for tonight. but yeah.

a year.

awesome. :D

so much sweetness

2011-04-13T10:04:00.001-04:00

today i let the morning routine slide. (yes, i know, it's only day 3, but i think it was worth it. teehee)

i got up a few minutes late, but i got dressed. came downstairs, took the fresh loaf out of the bread maker, poured myself a cup of coffee that had already brewed (mmm... programmable coffee maker...), and started pondering lunches.

i went upstairs to check on asher, who, unlike blithe and bram, was still asleep.

soundly.

lying on his back, sprawled out across his bed, mouth open with his sucky dangling precariously from the corner of his lips.

i stood there and watched him for a moment or two...

and let him sleep in.

blithe and bram got ready for school, and i watched them walk to the bus stop. they're so delightful, you know? they walk along, so young and fresh and yet also somehow so grown up... blithe has her uber-girlie walk, and bram with his little man gait. they were chatting and laughing and waving to me when they looked for traffic before crossing the street. and they got to the bus stop and chatted with their friends.

i went back inside and went upstairs to check on asher again.

he was just climbing out of bed, his crazy hair all crazy messy, sucky securely popped back in his mouth, and he flashed the brightest smile when he saw me come in the room.

i got him out of his grinch pj's, and helped him pick out his outfit for the day, and he told me all about his cozy and comfy and warm socks that he picked out a long time ago.

as he walked into the bathroom, i marvelled that just a couple months ago, he was still in diapers, and now here he is, completely potty trained.

i watched him put on his rubber boots on the wrong feet, and smiled.

i offered to help him put his jacket right side out, but he ignored me and kept working on it until the sleeves were right. he put it on by himself and made a zzzzip! when he pulled up the zipper.

he tried to open the front door, which i then unlocked, and he walked outside and waited on the porch while i locked the house.

he climbed up into the truck and plopped himself down in his car seat and chattered away while i buckled him in.

off we went to school, and we held hands as we walked through the front doors and down the hall to his classroom. he showed me his pictures on the wall and door, and told his EA all about his hospital dolly.

and as i left him there, i thought,

how is it possible to be blessed with just so much sweetness in my life?

and i smiled.

well, what do you know...

2011-04-07T21:54:00.000-04:00

yes, yes, it's been over 24 hours since we got home, and i still haven't posted. bad blogger mommy, bad bad blogger mommy. haha

i don't remember mentioning this here, but maybe i did... asher had an appointment in toronto yesterday. echo, ecg, cardiology, and pacemaker clinic. it promised to be a busy and interesting morning.

first up, i met quickly with someone from the CHSS (Congenital Heart Surgeons' Society) for our yearly check-in for the LVOTO (Left Ventricular Outflow Tract Obstruction) study that asher is part of. basically, the CHSS are following kids who, like asher, have issues with blood leaving the left ventricle. quoth i on FB the other day,

i'm amused by the LVOTO study asher is in. hmm... i guess a non-existent left ventricle and absent "outflow tract" would count as an obstruction, right? ROFL (oh, the things i laugh at anymore... LOL)

the study is nothing intrusive. every year i have to fill out a questionnaire and list everything asher's been through in the last year. the CHSS is doing a long-term study, looking at outcomes for kids like asher and others with HLHS and LVOTO defects. (for the record, i enroll asher in every study i'm approached about. selfishly, it's that many more people keeping an eye on my littlest man. but my main reason is this: i believe that we have a responsibility to use everything we have been given - the good and the "bad" - to help others. asher has been given half a heart. and so, when we're appraoched, i enroll him. i pray that the docs and surgeons will find ways to help kids with HLHS and other complex heart defects, so that others will not have to go through what asher has been through. but that's a tale for another day...)

so i met with carol, filled out the form (and noticed how many admissions over the last couple years have been for sepsis... shudder! it's one thing to know, it's a whole other thing to see it written down like that...) and then we went in for the echo.

my mother had come with us. and she was fascinated by the echo, having never seen one before. asher did very well, staying still and quiet for most of it. (and this is why there's a TV in every paeds echo lab. because it's too hard to keep a 4-year-old boy quiet for 45 minutes at a stretch. haha) i watched the echo, too... his heart is so beautiful, so simple, so complex, so scarred, so new... a work of art, truly.

(yes, i do love cardiology. why do you ask?)

then off to the ECG lab. asher put on the leads, with some help from the tech. i looked at the monitor. heart rate: 109 bpm. (remember that number. it's important.) so we got asher to sit still for 10 seconds, the tech printed off the report, and then she asked, still looking at the ECG, "does he have a pacemaker, mom?"

now, some of you might be thinking, "well, duh!!! of course he does!!"... but you should realize, there was no mention of the pacer on the orders. it said, "HLHS." that's it. no mention of the electrophysiological disaster area that is asher's heart. nope. just "HLHS." so she should have had no way of knowing that he had a pacemaker, just by looking at the tracings on her screen.

as i answered, "oh! yeah, he does."... i peaked over her shoulder at the monitor... and saw... a tell-tale spike before the squiggly wave. that spike... is the pacemaker, shocking asher's heart to induce a beat.

remember, asher's heartrate during the ecg was 109.

asher's pacemaker is set at 80.

which means that it should fire when he's beating below 80 bpm, and is supposed to stop pacing when he's over 80.

109 is over 80.

did you catch that??? remember how i've been saying for a while now that there's a problem with his pacemaker? yup. read on, gentle reader, read on.

so we saw dr r, who said that everything looked fine. asher's heart is working well, the muscle is strong and function is good. there is no obvious cause for the fluid retention the other week, but she said that sometimes fontans just need a couple days of diuretics, so it's nothing to be too concerned about. basically, "heart's fine. look elsewhere." no worries, there. kind of a relief.

but i was most looking forward to pacemaker clinic.

and it proved to be interesting, indeed.

we got in to that clinic at 1:00. i spoke with the nurse/tech, outlining my concerns.

his heart rate went down to 74 and stayed there for quite a while, and he had pain in his chest radiating down his left arm and into his jaw.
his heart rate, whenever checked, is 100. exactly. every. single. time.
the pacer spike on the morning's ECG.

she said, "yes, that does seem suspicious, doesn't it?"

she listened!!!!!

so she hooked him up to a monitor, which started showing his current (no pun intended) ECG tracing. "see what i mean?" i exclaimed, "his pulse is 95 and the pacer's firing!"

she looked and was surprised, first, that it would be doing that, and second, that i knew what i was looking at. (she then told me about a new Physician Assistant programme in canada, and she strongly urged me to look into it and specialize in paeds cardio. she even gave me her card so i can let her know if i decide to pursue it, because she's really interested in it, too. but back to asher. haha) she watched the monitor for a moment, waiting to see if it was just a fluke, a momentary firing, or something significant.

it was something significant.

she continued with her pacemaker exam, checking its settings and collecting its data. she showed me that his heart rate is, correctly, just above 80 most of the time, and that his heart rate is elevated appropriately for his age (it looks like it goes up with activity, which is what a heart rate is supposed to do). and she kept looking...

and remembering what i'd said about his heart rate always being 100 whenever it's checked...

she did a little test.

she unhooked asher from the monitor and took him into the hall. there, she, asher and my mother ran up and down the hall (well, the women ran; asher walked quickly and yelled at them. he was tired and grumpy and wanted to leave). then they came back into the room, and she hooked him back up to the monitor...

and his heart rate was 155, which was

appropriate for an active heart rate in a child his age.
nearly double the pacemaker's setting.
paced.

that's right, you read that correctly.

his heart was beating 155 times per minute, and the pacemaker was prompting the beats.

she went and got the EP fellow.

he looked at the data, and agreed that asher's pacemaker wasn't working the way it's supposed to. "it's too sensitive," he said. so christine fiddled with the settings and made asher's pacemaker work properly.

then she threw in a little bonus: a sleep mode. during the day, asher's pacemaker will keep his heart rate above 80. overnight, from 9:30 to 7:15, it will keep him above 70. when he's sleeping, he doesn't need as many beats, so he can safely go down to 70. this will save the battery, but also allow for better sleep, among other things.

see, if his pacemaker was keeping his HR artificially high, that could account for a lot of the symptoms asher has been having, including,

paleness and grey spells
looking flushed
irritability
chest pain
shortness of breath
reflux
difficulty sleeping
loss of appetite

do those symptoms sound familiar? they are CHF symptoms, but they are also what asher has been experiencing over the last few weeks.

do you realize what all this means?!?!

i texted to some friends,

hey! guess what! the pacer was "too sensitive"!!! so she fixed it! which means... there WAS a problem, it DOESN'T need to be replaced, and i'm NOT insane!!!

honestly, i could have cried. it was such a relief to know that i wasn't imagining things, and that, while it sucks that asher's pacemaker wasn't working properly, it was easily fixed. all it took was for someone to listen to me and take me seriously. rather refreshing, i'll be honest.

now, i just want to make this clear: i really like our cardio in london. she is lovely and caring and talks to me as one mother to another. all rare qualities in a doc, and welcome traits, at that. but all this could have been fixed over a month ago, when i first raised the issue. all it would have taken was for her to take asher for a quick run around the clinic for a couple minutes, and maybe a monitor in the room to hook him up to during the tests. honestly, i'm not sure where this leaves us. i can't afford to leave the london clinic and deal solely with toronto; i just can't. yesterday alone cost me the equivalent of one week's groceries. one day. one week's grocery bill. not do-able in the long run. on the other hand...

toronto listens. toronto looks deeper. toronto fixes things.

oh! and in case you're wondering if, indeed, the pacer was the cause of asher's issues lately...

while i'm not a doctor and have no real medical training, i can tell you that his colour is returning (he was already looking better before we left the hospital yesterday), and he's less irritable and eating more. already. he is refluxing less and as i type this post, he is sleeping comfortably upstairs.

just sayin'.

all in all, it was a good day. a long day, but a productive one. i'm "happy" and asher's feeling better.

so, i want to thank everyone who has been praying for asher and this appointment. your prayers were (and are) very much appreciated. and see? prayer works!

well, it was a day...

2011-03-30T10:36:00.002-04:00

so, asher was home from school yesterday, which meant that he and i were going to have a delightful day, just the two of us. oh, i had grand plans. he wanted sushi for lunch, and i was going to spend the afternoon doing laundry and tidying up around here.

the best laid plans... sigh...

so, he was feeling fine in the morning. a little tired, but he hadn't slept overly well on the weekend, due to the diuretics waking him up a few times a night. but other than that, he was fine. chipper, funny, playful, laughing hysterically at treehouse cartoons.

we got dressed and headed out for lunch. we got our sushi, sat down, and started to eat. he ate the rice from a couple rolls, but just kept on talking and playing. (he doesn't eat much, so this wasn't unusual, so i thought nothing of it.) he started talking about some of the things he saw around us, making conversation, and pointing out things he wanted me to notice. so i noticed them.

and then i noticed him.

he was navy blue.

still chatting, but slowly becoming less animated.

and then he started shivering.

i asked him if he was cold and wanted to put his coat on, and he said no.

so i reached across the table and touched his hand

and it was cold.

and i don't mean warm with a hint of cool.

it was just. plain. cold.

i watched him for a moment, thinking (read: hoping) he'd just caught a draft and he'd warm up in a minute.

but then he started getting cranky and tired, and he was still blue and still shivering and still cold to the touch.

so i called our amazing dr b, who is on call, and she sent us to the paeds ward at our local hospital for a sat and blood pressure check.

sats were fine (97%), bp was fine (113/59). and she checked his temp. (by now he was starting to feel a bit warm, but nothing too bad....)

underarm temp was 39.2C (102.5F).

we went off to dr b's office, where he was very irritable, very lethargic, still pretty warm 20 mins after the tylenol at the hospital), and he was complaining that his pacemaker hurt.

so she checked his pacemaker, and yes, it hurt. and the zipper there, along with his G-tube scar were pink.

they're never pink.

so it was looking like there might be an infection in his pacer site. if that happens, it's bad, because those infections tend to spread quickly and if it gets into the pacer pocket, as you might remember, it's got a highway straight to his heart. we've been through this before, and it wasn't fun, to say the least.

off we went to emerg in london. dr b called cardio and gave them a heads-up. she spoke with the NP who was quite concerned (!!) and said that they would need to do a blood culture, and a urine culture (because it's asher, and he has a long, complicated history. urine cultures are now routine for trips to emerg for him).

we were taken right in, and the doc assessed him. yup, he's sick. so he called cardio.

who sent the resident.

who called cardio.

who came down.

and assessed a sleeping and suddenly febrile asher (as in, 20 minutes earlier he was perfectly fine, playing and sitting at a delightfully normal temp. suddenly, he became flushed and warm and curled up on my lap and fell asleep. all that happened in the space of 5 minutes). his temp was back up to 38.7C (101.6F). cardio poked the pacer site, and asher winced and whined, but did not wake up. asher always wakes up for this sort of thing. the cardio poked his pacer, checked his liver, looked in his ear, so yeah, there were a lot of opportunities for my littlest man to wake up.

and he didn't.

so cardio ordered an ECG. which asher slept through.

and then we were taken upstairs to the cardio clinic for a quick echo, just to check pump function. asher woke up as i put him on the bed, and i gave him the advil our nurse had provided. cardio gave him a tootsie pop, and did the echo, which was fine. then he gave asher another tootsie pop. and he said, "well, his heart is fine, so i think it's just a virus. you can probably go now, but check what they say in emerg."

the doc came over and said that since the chest and abdominal xrays were fine, and the echo and ecg were fine, we could go.

now, at this point, i was not aware of what the NP had said, but rest assured, when i informed dr b that we were coming home, she said, "did they do bloodwork? how was it?" ummm... "they didn't do any bloodwork."

"WHAT?!?!?!?!?!?!" quoth dr b.

it was ruled viral and we were sent home... without bloodwork. no CBC, no culture. both of which are just standard procedure when asher's in emerg.

now, don't get me wrong. i'm quite happy with them not poking my boy and hurting him like that. he's tired of being poked, and i don't like it, either. but um... bloodwork would have given us some answers.

and because the symptoms came on so quickly...

and that has happened before...

in october 2007, for example, when asher had sepsis...

do you kinda think some bloodwork and maybe a culture would be asking too much??

this morning, asher still has a pretty high fever (39.5C, or 103.1F, which is pretty close to his febrile seizure threshold), but as long as the tylenol is doing its thing, he seems ok. fever comes down (he's still warm but not too bad), and he's in a better mood and tormenting poor little Mouse), so right now i'm not overly concerned. it may, in fact, "just" be viral and he'll pull through in a few days.

but still. an important test was not done.

so, i'll admit, i'm a little torn. cardio checked him out as thoroughly as they can, which frankly, is huge. the NP even said that tests were needed. and i think we're at the point now that when tests like this are ordered, i get a little freaxious.

it's good that they took this seriously and did something, so i'm not complaining about that.

but the bloodwork...

or lack thereof...

that worries me a bit. and frustrates me a lot.

i'm almost to the point of moving to another city so that we're closer to SickKids and another children's hospital. don't worry, there are a lot of things keeping us here, and i have to think about the entire family, not just asher. and our paeds can order bloodwork etc here if she wants and i have no issues driving to toronto for cardio if i have to, so we likely won't be moving any time soon... but the idea is there, and it's being considered. i'm just getting to frustrated here. i don't know what to do, frankly. i just don't know...

quite an interesting day today...

2011-03-28T21:10:00.000-04:00

yup, quite an interesting day, indeed...

i took asher to see our amazing dr b this afternoon. turns out, asher has lost all the extra fluid weight, and is back down to his 15 kg (33 lbs), where he belongs. the puffiness is gone, the sweating is gone, the warmth is gone, the shortness of breath is gone. his colour is back, his energy is back. his liver is back up where it should be. all of this means

no more failure!!!!

one little lingering issue to keep an eye on, however. asher's blood pressure is quite low. his norm is around 120/80, but this afternoon it was 86/54. she called dr russell in toronto, and we're going back to paeds on thursday for follow-up.

we also have a date for our rescheduled appointment in toronto. next wednesday (april 6) we will be heading off to toronto. we'll meet with someone from the Congenital Heart Surgeons' Society to fill out some forms for the LVOTO (left ventricular outflow tract obstruction) study, then off to the echo lab. we'll see dr russell, then down the hall to the pacemaker clinic. a long morning, but hopefully it will be productive.

and now...

for the bad news...

we found out today that our favourite cardiologist in london

is moving back to germany.

i don't quite have words right now, so i'll leave it at that for now. i'll comment when i have something useful to say.

anyhoo, that's the day. thank-you all so much for your prayers over the weekend. as you can see, prayer works!!! :)

surrendering is NOT the same as giving up.

2011-03-27T22:05:00.001-04:00

oh, my sweet, sweet little asher...

by now you probably know that, if he's not already failing, he's at least "flirting" with it.

and as you can probably imagine, i hate it.

i love my littlest man. but just last month i was reminded of something:

kids with HLHS have a 70% chance of surviving to 5 years.

and asher is already 4.

now, i know, statistics are not a death sentence. i know. i really do. but...

asher's HLHS is pretty much as bad as it gets. and he "should" be dead 15 times by now.

the other day, when we went to see our amazing dr b, i already knew what she was going to say. i was hoping for an ear infection or bronchitis or a nasty cold or something, but i knew. i memorized that list of symptoms when asher was four weeks old. i know what to look for, and i knew what i was looking at.

i also know about the possible ischemia, i'm watching and waiting for a heart attack, i'm pretty sure his pacemaker isn't working properly.

but the moment dr b uttered the words "congestive heart failure," it was as if someone kicked me in the stomach. i wanted to vomit. i wanted to cry. and i was just. so. tired.

call me crazy, but i don't want my precious little man to die. i don't. and i can guarantee that anyone who has met him feels the same way. he's just too amazing, too sweet, too funny, too loving, too.... asher-ish for that. i want him to grow up and grow old and have a dozen healthy kids and a hundred grandkids and a thousand great-grandkids.

but that 30% haunts me...

and yet, i know that God specifically designed asher's heart this way. i don't know why, but i know that He did.

so how do i reconcile this mother-love/fierce determination to see my child grow up, with God's will?

um... i don't know.

quite a while back, i was in a small group. and we were talking about surrender. namely, surrendering our baggage to God. here is what i said:

my son has half a heart. he's been through too many surgeries, too many infections, too many hospital admissions. he has too many doctors. and yet, i know that this is God's plan for him. and so, because of that, i have surrendered asher to Him. whatever He chooses to do, whether it's to heal asher completely, whether it's to take him from me, whether it's to keep him here and not take away this illness, i have accepted and will continue to accept that that is God's will. but in the meantime, even while i wait to find out what God has planned, i have to deal with all of this. i have to take asher to appointments. i have to watch for symptoms. i have to sign consent forms. i have to sit with him in ICU. i have to feed him according to his special dietary needs. i have to deal with his condition now, even though i've handed him over to God.

and that's that, i guess. i've surrendered asher to his Maker. thankfully, his Maker has decided that asher will stick around, though for how long is anyone's guess. but i still have to deal with all this crap.

i read something interesting today:

faith isn't necessary when we know the outcome. faith is what gets us through the uncertainty.

yes, i'm exhausted. yes, i am completely sick and tired of heart stuff. yes, i hate it.

no, i don't know how long he'll be here. no, i don't know if he'll ever get a new heart. no, i don't know what's going on in that wonky little heart of his. no, i don't know if he'll pull through this latest bout of failure-ish. no, i don't know how bad it will get, or if the few doses of HCT will do the trick.

i just. don't. know.

and i hate that.

but.

when i stop, and i mean

when i stop

and listen

and look

God is there, doing something. i don't know what He's doing, but He's in there.

and i'm ok with that.

(ish.)

but i accept that God sees the big picture and i don't and He knows what's best and i don't and He loves asher waaaaay more than even i ever could.

if He chooses to take asher at some point, i'll hate it. but i'll accept it. i'll weep and sleep and grieve and mourn and stare off into space because that's the only thing i'll be capable of doing (can you tell i've mourned him a few times already, that i'd have an idea of what i'll be like?)...

being asher's mother isn't easy. being asher isn't easy. but you know what?

every night, when asher says his prayers, he asks God to "make me feel much better." how does this 4-year old know to ask God to do that? how does he know that God can do that? and how does he not stop asking for relief despite the fact that it doesn't come and he still has chest pain every day and he still gets tired and short of breath and overloaded with fluid and he still can't keep up with blithe and bram?

somewhere along the way, asher has learned to trust God.

and somewhere along the way, asher has learned to wait patiently for God.

and it still hurts and he's still scared and he's still going for therapy on tuesday and he's still sick...

and he's still trusting God and waiting for God and looking to God for what he can't do himself.

i'll admit, sometimes i get caught up in the horror of HLHS and CHF. sometimes i mourn my child who is still here but may not be for much longer. sometimes i just hold my breath waiting for God to do something, anything.

but most of the time, i just continue to watch for symptoms and take him to the docs and give him his meds and feed him fatty foods and keep on keepin' on...

and i wait for God.

and you know what they say about waiting for God:

But those who trust in the Lord will find new strength. they will soar high on wings like eagles. they will run and not grow weary. they will walk and not faint. (isaiah 40:31)

last night i just wanted to cry when i thought about this latest bout of failure. and i almost cried when i told my friend about it this morning at church. but i also know that God is in control. God has a plan. and God hasn't forgotten about us. so we're just waiting for Him.

and tonight, sure, i still want to cry and vomit when i think about it all. but i'm not so tired. and i remembered to pack his meds tonight when he went to his dad's. and i'm going to make an appointment for him to see paeds again, and i'm going to take him for play therapy on tuesday. we're going to keep going, because we're waiting for God and trusting God, and that gives us the strength we need to get through today. today we ran and didn't grow weary. tomorrow we may walk and not faint. our pace isn't the fastest and we don't actually know where we're going, but we'll just keep on going.

and for today, that's enough.

oops, my bad...

2011-03-26T08:18:00.001-04:00

i realized this morning that i forgot a couple details last night.

first of all, asher's weight. last week, asher weighed 15.2 kg (approx 33 lbs). yesterday, he weighed in at 16.9 kg (approx 37 lbs). that's right, in about 10 days, asher gained about 10% of his body weight.

sounds like a growth spurt...

until you remember that his legs were puffy...

and by that i mean, dr b was poking dents in his shins. go ahead, try that on yourself. i'm willing to bet you can't do it.

that's because you don't have edema. puffiness. fluid retention.

caused by congestive heart failure.

i'm really tired of all this. i really am.

nothing good comes from a 4 year old flirt

2011-03-25T19:21:00.002-04:00

especially when that 4 year old flirt is asher.

and he's not flirting with anything good.

so, we saw paeds this afternoon. asher has been puffy and pale for the last few days, and pretty short of breath. as in, well nigh gasping for air after walking across a room. nice.

now, the other week i took asher in to see our amazing dr b when asher was puffy. his ear was pink, and his lungs were wet, and his liver was down and actually lower than it's been in a very long time. she called cardio, who said, "as long as he's doing well with his feeds he should be ok." ("feeds"?? is asher a baby???)

this week, asher's liver is still down, his heart rate is 100 (dead-on, as usual... sound paced to anyone else?), tachypnic (breathing fast, like 50 breaths per minute), his liver is still just as far down. he's puffy, pale, tired, not eating much, not peeing as much, sweaty and warm (not feverish), a bit irritable, short of breath, etc etc etc....

oh, yeah. and his legs are puffy.

which they never are.

ever.

ever.

amazing dr b says, "well, asher's definitely flirting with CHF. i'm going to suggest you go to hamilton and spend the weekend at your parents'. that way, if he needs to be seen, you're closer to SickKids emerg."

but, before we left, she decided to call london cardio.

but she called and spoke with the cardio on call. for the record, it's the same doc who has said, "oh yeah, these symptoms (of severe CHF) are normal for this stage," "as long as he's tolerating his feeds, he's fine," and "are you sure he's hypoplastic left?" so you can imagine what i expected.

but what he said was...

wait for it...

"give him some lasix and see how he is on monday."

wha---?!?!?!

this doc, famous for brushing off everything, took this seriously and prescribed a med to deal with it.

oh, wait. some of you might not know what lasix is. it's a diurretic. it's job is to make the patient pee a lot, thereby removing excess fluid from the body. in CHF, the heart doesn't function well enough, so blood doesn't move through the body properly, and fluid leaches out of the blood and accumulates in the tissue, usually around the eyes, fingers/hands, and feet/ankles. this also increases blood pressure, and will cause the heart's function to decrease proportional to the amount of fluid build-up. it's a vicious circle, and lasix (and other diurretics) are designed to stop the cycle. ideally, it stops CHF in its tracks.

sounds good, you say?? well, yes... generally... which is to say, the idea is good, but the proposed med is a no-go for asher. you see, asher has nephrocalcinosis. this means that there is a build-up of calcium in the kidneys, which impairs renal function, which increases blood pressure, decreases heart function, which impairs renal function, which increases blood pressure... yup, another vicious circle. and lasix... causes calcium to build up in the kidneys.

delightful!!

but asher can't have lasix, so so i asked dr b prescribe HCT instead. HCT (hydrochlorothiazide, which i spell out merely to show off, haha) is another diurretic, albeit a milder one than lasix. so instead of one dose, dr b prescribed seven. haha

anyway, there you have it. asher's flirting with congestive heart failure. and i'm going to spend a freaxious weekend watching him and praying that the HCT will handle things and he'll feel better.

that being said... please continue to pray for him. i still have my suspicions about the pacemaker, which was supposed to get checked on wednesday in toronto, but due to horrible weather, we didn't make it. asher and i got stuck overnight in hamilton, actually. but he is still complaining frequently that his heart is "sick" or "hurting" or "feels squeezed," and he was going to tell our toronto cardio this week that he frequently gets a lot of pain in his chest, left arm, neck, shoulder and jaw. he also tells me fairly often that his heart is "burning." this has been mentioned to cardio (london)... and yet, even though they know he doesn't generally reflux anymore unless his heart is doing things it shouldn't... they brushed it off. sigh. i know the reflux will resolve when his heart improves, so i'm not concerned about the reflux itself. it's just frustrating to know that something is wrong and docs don't seem to be listening.

so please pray for me, too. i'm tired, to be honest. the fontan was supposed to be it. it was supposed to usher us into the "promised land," where hearts are stable for a very long time and we can enjoy normal life. granted, he's more stable than he's ever been in the past... but that's not saying much. so i'm tired of all this heart stuff, and asher's tired of all this heart stuff, and i'm feeling burned out, and asher's scared of doctors again.

anyway, there you go. a little update. if anything happens over the weekend, i'll let you know. and when we see a doc next week (still need to reschedule for toronto), whether it's cardio here or there, or paeds, rest assured i'll fill you in on that, too. thanks for the prayers.

sigh...

2011-03-14T12:04:00.000-04:00

a little bit about asher first, then moving on to bigger, more important things...

asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?

he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"

"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."

"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)

so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.

dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.

one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.

but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!

so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.

Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:

It has been a long night - B has not turned the corner yet. I have not seen her blood results yet today, but through the night the bleeding started. I will spare you the gory details, but this is "the" next step in the DIC - the only way to treat it is to eliminate the cause, and that is taking its time. Please continue to pray, cross your crossables, whatever you can do...

if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.

i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.

my bad :S

2011-03-06T20:27:00.000-05:00

i realized at church today that i had forgotten to update the blog here with some more recent developments. my bad. so here we go...

the other night - thursday, i believe - i was chatting with our amazing paeds dr b. she informed me that she was not overly convinced by london's take on things, and so she called toronto cardio to talk it over with them.

and, it would seem, toronto was very concerned by what they heard.

and, it would seem, toronto wants asher to come to pacemaker clinic in toronto.

because, it would seem, they think there is, in fact, something wrong with asher's pacemaker.

and, it would seem, they are not overly impressed with her idea to lower his pacer setting when he's stable enough. (which, frankly, is fine by me, since she wants to lower it to 75, and asher was having chest pain right around that point, so 80 is quite alright in my books.)

now, i didn't get a chance to call SickKids on friday, so i'll be calling tomorrow, talking it over with them a little further, and setting an appointment date for their pacemaker clinic.

and then i'm going to vomit.

i'm going to be honest here: i want to go with dr w's ideas here. i like the idea of growing pains and more data and asher being worried or stressed somehow when his pulse is checked in clinic.

but... and again, i'm being honest... i'm not entirely convinced. part of me still... doubts, i guess. it's not that i don't trust dr w, because i do. i think she's a great doctor. she cares, she understands that i'm a mom and i'm concerned about my boy. she knows what it's like to be in position. she identifies, understands, cares, listens, explains... everything you could ever want in a cardiologist. except...

ok, i'm going to tell you a little story:

over the last couple weeks, i've been asking asher off and on (mostly when he's becoming flushed and/or grey) how he's feeling. but, in an effort to keep him honest, i'll ask him how he's doing when he looks fine. and once in a while, mostly on a whim (read: when i think of it), i check his pulse.

i did that yesterday, in fact. for no real reason, i sat him on my lap, found his pulse, and counted for a full minute. he was relaxed and calm and happy. no worries. just snuggling quietly with mommy. and his pulse was...

wait for it...

100.

dead on, 100. not 99, not 101. one. hun. dred.

which is, you'll note, exactly his heart rate every time it's checked anymore. every. single. time.

100 bpm.

now, i have some thoughts about this (surprised? haha)... it's really kind of a hunch... but it does involve the pacemaker not working properly. i'm hoping i'm wrong. i really hope i'm wrong.

but the freaxious feeling in the pit of my stomach just won't go away...

i'll keep you posted. and i promise i'll do a better job over the coming days.

meanwhile, please pray for us. please pray for asher, that he will be ok. he's still having chest pain every day. his energy is still up, but the pains come on every time he's active. so please pray for him. also, please pray for me. like i said, i have this knot of freaxia in my gut that just won't go away. pleasse pray for peace for me, that i'll continue to trust God, trust the docs, trust asher... that i'll do the right thing, speak the right words, ask the right questions, that sort of thing. please pray for me. i also haven't been sleeping very well lately, and if we have to drive to toronto, i need to be alert enough to get us there and back safely. (haha) trust me, i'm not a danger behind the wheel, and i actually have enough energy during the day. it's just that i'm not sleeping at night, so please pray that i can get some rest.

now, for something a little lighter...

asher and i went out last night, just the two of us. a little date, if you will. we went to see Gnomeo & Juliet, and he loved it. ok, so did i. i saw it the other week with bram, and i've loved it both times. it just doesn't get old. it's such a cute movie. and this coming from a Shakespeare purist here, but this movie is sooooo cute, it's great! love it!!! seriously, go see. both my boys had a great time. we all highly recommend it. :) in fact, it's asher's "best" movie right now. awesome! :)

well, one year later, here we are...

2011-03-02T10:26:00.000-05:00

that's right, folks, today is asher's first "fontanniversary." one year ago today, at exactly this time, asher was in the OR at SickKids, with dr c finishing off asher's new circulation.

one year ago today, dr c said, "hopefully this is the last surgery he ever needs."

i'll give you a moment to stop laughing at the irony... {hums a little tune}

k, so here's where things stand as of today:

i just talked to dr w, and asked her my questions about the pacemaker. and she was a freaxiating font of information. seriously, i kind of have the heebie-jeebies right now, actually. {shudder}

so i asked, "how does the battery have 3 years more life in it now than it did in october?" her answer: "pacers usually underestimate the remaining life at first. but as they're in the patient longer, they collect more data, and can make a better estimate of the power it has left. so it is more accurate now than it was then. but you know, i had the same question when i was doing my training." ok, that makes some sense. (and how cool is that? i officially think like a cardiologist! HAHA)

"ok," i asked, "but it's pacing 88% of the time. so it's firing that often, right?" "yes," she said. "so if it's firing that much more often, why is it that his HR is 100 every time we check his pulse?" "well," she said, "when we check his pulse, he's probably nervous or scared or in some pain, which makes his heart rate go up." ok, we'll go with that (for now). not sure i'm entirely on board with that explanation, but i'll go with it at the moment. beats the alternative. {shrug}

then dr w added, "at some point, once he's more stable, we'll adjust the threshold of the pacemaker, lower the settings to maybe 75 or so. that way we can save the battery. but i don't want to do it now when he's like this. but once he's stable, we'll do that. maybe in a few months."

i told her that he now gets pain in his chest every time he's active. he gets a little edgy and flushed and tells me that his heart hurts. every. single. time. she was quite concerned about this. hence the "unstable" comments.

meantime, she wants us to switch his reflux meds from ranitidine to lansoprazole or something else. she thinks that reflux might account for some of the chest pains. and she just might be right... at least to some extent...

but why is he suddenly refluxing so much? he doesn't have that issue anymore, except in certain situations... hmmm... but nothing is showing up on ECG, echo or chest x-ray... but two years ago, nothing showed up on tests, either...

maybe i'm just paranoid. who knows. it's possible. but for now, i'm just hanging out with my littlest man at home. because, oh yeah, he's afraid to go back to school. last time he was there, he was taken to emerg in an ambulance with chest pain. can you say, PTSD??? not that i blame him...

but i made him pinky swear that he'd go to school tomorrow.

but it'll probably just be for half a day. i'd rather ease him back in than just throw him back in full time.

so there you go. the latest goings-on in asherland.

have a great day!!!! :)

asher prayed this week, "God, i want to be your personal penguin."

2011-02-25T20:52:00.000-05:00

um... ok...??? aka, why i'm really starting to believe in multiple universes. aka, blerg. :S

2011-02-25T09:51:00.000-05:00

so, it was cardio yesterday. and i have to admit, it left me with more questions, confusion, a little bit of freaxia, and a touch of "WTF?!" (for lack of a better term).

but for anything here to make sense to you (haha), you're gonna need some background information:

asher's pacemaker is set at 80. this means that his heart rate is never supposed to go below 80 beats per minute.
when the pacer was checked in august, it was firing approximately 80% of the time and had 6 years left in the battery.
when the pacer was checked in october, it was firing approximately 80% of the time and had 5.5 years left in the battery.
between april (when he got the pacer) and november, asher's heart rate was always in the 80 to 86 range. never higher. which means that he was basically just riding the pacer.
over the last couple of months, asher's heart rate has been in the 100 to 108 range. it has never been lower whenever it was checked (other than tuesday, when it was 74).

so, we went to clinic today for our pacemaker check.

so dr w checked the pacemaker.

and according to the computer,

the pacemaker is firing 88% of the time. you'll note, that is 10% higher than in october.
the pacemaker battery has 8.5 years of juice left.

um... wha-?!?!

ok, so i'll readily admit that i am not the most tech savvy person out there. yes, i'm pretty handy when it comes to knowing how to use a computer, but i know virtually nothing about how the computer actually works. and i'm not electrician, but i think i've got a pretty decent handle on batteries.

meaning, i know that they don't recharge themselves. on their own. without help.

and they certainly don't gain half again as much power. on their own. without help.

and they most definitely do not gain half again as much power by working harder than ever.

and why, if it's working so much, is his heart rate so often in the low 100s? i mean, if it's firing that often, shouldn't his heart rate be in the low 80s most of the time? again, i'm no electophysiologist, but it seems to me that if his heart rate is consistently in the low 100s, that would mean that his pacemaker is firing less often, not more. but apparently it's firing more often.

oh. yeah. some of you reading might not realize this: the pacemaker is designed to keep the heart rate above 80. after a few minutes of shocking the heart, it will pause, to see if the heart can sustain its own rate. if it does, the pacer stops firing and goes into "sensing" mode. the pacemaker will not prompt every single heart beat. so it is asher's own heart that is beating 100 times a minute. the pacer has nothing to do with that.

and in addition to not being an EP, i am also not a statistician. so can someone please tell me the odds of asher's pulse being checked only during the few minutes that the pacer isn't firing? that those rare moments of non-pacing are the times when his pulse is checked? every. single. time? what is the probability that his pacer is firing all the time except when his pulse is counted and those moments just happen to be the only times he's not paced?

you can see why i'm so confused.

dr w did offer one possible explanation, though: growing pains. makes a bit of sense, when you think about it... he's a growing boy and he has a lot of things in there that don't grow, so there can be some pulling and straining and so forth. but...

i don't understand where the jaw and left arm come into play with this theory. i mean, i remember having growing pains when i was growing painfully back in the day, and i don't remember having pain in my jaw. as for the left arm...

other than the pacemaker, which is on the left side, below his ribs and squished against his stomach... everything non-grow-able is on his right side. glenn? right side. fontan? right side. pacer leads? right side. stent in the aortic arch? center. MPA patches? center. RPV patches? just right of center.

ok, i know there's the possibility of pulling and such and that pain could radiate... but...

riddle me this...

when you have a patient present in emerg with an extensive history of severe heart disease, symptomatic bradycardia and Sick Sinus Syndrome with a pacemaker, and his heart rate is decreased (below his normal and pacer settings), and he is grey and very flushed and complaining about chest pain radiating down his left arm, are you going to think... growing pains???

i don't know...

i just don't know...

you see why i have so many questions now. i don't get it. the growing pains theory makes sense if you eliminate tuesday. the pacemaker report makes sense if you disregard everything you've observed and reported before yesterday's appointment, as well as all laws governing batteries and technology.

and this is why i'm starting to believe that, sometime in the last couple months, we slipped into a parallel universe. one where dryers don't blow fuses with every load (been having some electrical issues at home), stove burners actually heat up (the burner that hadn't worked in 3 years decided to work the other week and i almost burned the house down), blithe wants to clean her room and do as she's told the first time, and batteries recharge themselves by working harder and longer than ever.

technology is great... until there's a glitch. {wave of nausea}

2011-02-23T23:31:00.000-05:00

and when the glitch could kill your child... {wave of nausea}

asher's london cardio, dr w, has suspected for a few weeks now that asher's pacemaker isn't quite doing what it's supposed to do. what with the symptoms, like grey spells, it was a possibility.

turns out...

she's probably right.

almost every day for the last few weeks, asher has told me that his heart hurt. sometimes it burned, sometimes it just hurt. and something else always hurt, too, like his throat, jaw...

(ok, a warning: i'm going to try hard to not to vomit while i write the rest of this post. it's just. that. freaxiating.)

yesterday, shortly after noon, i got a call from the school. it was asher's EA (educational assistant). she said that asher told her that his chest was hurting. she also said that he was flushed and several people had remarked that he was puffier than usual. so i asked to talk to him, and i asked him,

"hey, hunny, how are you?"

"not good."

"what's wrong?"

"my heart and my arm hurt."

"your heart and your arm????"

"yes."

"which arm?" (at this point i realized that he can't show me which arm over the phone. and he doesn't know his right from his left. on to plan B...) "show mrs e which arm hurts, and give her the phone, please... {mrs e comes to the phone} which arm did he just show you?"

"his left arm. why?"

"because he's saying it hurts. he needs to be seen. right now."

a couple phone calls and the school called 911 and asher was rushed to emerg.

the vitals en route were as follows:

BP was 116/54.
sats were 94% (down a bit off his norm, but not much. not enough for 02)
heart rate was 74.

74?!?!?!?!

yes. 74.

his pacemaker is set so that his heart rate doesn't go below 80.

his heart rate went below 80.

and when i saw him, he was scared (he never gets scared, especially when he gets to ride in an ambulance), his forehead was grey, and his cheeks and mouth were the brightest shade of red i have ever seen on him. even with a high fever, asher has never been that flushed.

he still had pain in his chest and arm by the time he got to emerg. this was about 40 minutes after i got the call from the school.

so the doc ordered a chest x-ray, bloodwork and an ECG.

asher and i played a bit, and rested a bit.

after a couple hours, his heart rate was up to about 82. and fyi, his usual anymore is 100. but it's over 80. but you'll note, about 20 bpm slower than usual.

in the end, doc didn't have any concerns. quoth he, "if an adult came in with chest pain like this, i'd continue to investigate and look into things like coronary artery disease. but he's too young for that."

to which i almost ~~snapped~~ replied, "he's also too young for a pacemaker, bloodthinners, diuretics, beta blockers and ACE-inhibitors. what's your point?" but i bit my tongue.

i called our amazing paeds dr b once we were discharged. i told her everything, including the uber low heart rate. so she called cardio. then she called me back, saying that dr w wants to see asher on thursday at 1:00, and she'll check his pacemaker.

now, if you know me, you know that i have been thinking about this non-stop since yesterday. coronary artery disease? pacemaker? symptomatic bradycardia? chest pain????????? wha-?!?!?!

never fear, gentle readers, i have figured this out.

sure, there's a possibility that asher may have coronary artery disease. with asher, anything is possible, especially when you take into account the very heart unhealthy diet he's on in an attempt to pack on some pounds. so i'm not ruling that out. but i wouldn't bet on it, either.

no, my money would be on the pacemaker.

and now you're confused. so i'll explain.

chest pain (aka angina) occurs when the heart muscle does not receive adequate oxygen. now, with CAD, plaque builds up on the walls of the arteries, decreasing the amount of blood that can flow through. decreased blood through the arteries means less blood getting to the heart, which means less oxygen getting to the muscle. which means bad.

with symptomatic bradycardia (aka, heart rate is low and affecting function), the heart is not beating fast enough. this means that less blood is being pumped through the coronary arteries. which means that less oxygen is getting to the heart muscle. which means bad.

and with heart block like asher's, his heart rate doesn't always go up with activity. which means that his body (including his heart) needs more blood and oxygen, but his heart can't send it out. this is what causes things like fainting, grey spells, dizziness, chest pain... oh. and the chest pain... can feel like tightness, a weight on the chest, or... burning... yes, angina and reflux can feel the same... making them easily misdiagnosed as the other...

so here's where things stand right now:

asher is not going to school until this is sorted out and his pacemaker is working and his heart is beating and not... um... attacking. it's too risky.

asher has been instructed to tell someone (me, his dad, my mom... whichever adult he's with at the time) when his heart hurts, and if his jaw, neck, shoulders or back hurt. we need to know right away. because if he starts to have chest pain, he needs to go to emerg. right away.

i am trying not to feel guilty. for weeks now, asher has been telling me that his heart hurts. that he gets dizzy. that his neck, throat and jaw hurt. and i was brushing it all off, thinking it's nothing more than a bit of reflux or tiredness. sure, i've been watching him, playing chicken with him, if you will, but still... he's had these symptoms, and i did nothing. ok, i mentioned the grey spells to cardio. and i told dr b about the reflux (or what i thought was reflux... now i don't know...). so in my head i know that i did the best i could with the information i had at the time... but knowing that what i didn't know could have killed my baby... and could still do him a lot of harm until his pacemaker gets sorted out...

i just want to cry.

instead, i'm breathing. and i'm trusting God. i don't know what is going to happen, and i'm scared out of my mind, but i'm trying to trust God. i don't succeed 100% of the time, i'll admit. but i'm working on it. so i'm working on breathing and keeping busy and just waiting for the appointment tomorrow afternoon.

ps - sheryl, i've been thinking about this off and on for the last 6 months... and i think you might be right. at least some times. times like this, for example. sigh...

asher's new "best" song

2011-02-23T12:20:00.001-05:00

on chest infections and immunology...

2011-02-19T14:39:00.000-05:00

i just realized today that the last post here was about asher being sick, and i kind of left you hanging with that. my bad. so here's what you need to know.

he's better now. a few days of antibiotics cleared it up quite nicely, and although he's puffy off and on now, he's much better. so that's good.

and this week was our semi-annual immuno appointment.

i was all set to tell them that there's obviously nothing wrong with his immune system, since he's in school full time and the flu and chest infection were really the only things he's caught, and really, who doesn't get the flu or a chest infection in the winter in ontario, right? so he's fine and we're done, thank-you very much.

anyway, we went for the appointment, and the fellow came in. he asked a lot of questions like "has he had any weird rashes? any skin absesses? how long did it take him to get over the flu? what was the infection treated with? has he had this? has he had that?" oh, and the famous, "have you been to genetics?"

sigh... genetics...

now, immuno has been nagging me about genetics for 3 years now. they are convinced that asher might have DeGeorge Syndrome. i am convinced that he doesn't. wrong kind of heart defect, wrong kind of kidney issues, non-congenital feeding issues, he has chromosome 22q11 (the absence of which is an important marker of DiGeorge), and unless you count severe cuteness as a facial deformity, he doesn't have that issue, either. the only thing that's right is the type of immunedeficiency. so i don't think he has this particular issue. and really, what can genetics do? nothing. so why bother??

but i have tried this argument with them for a couple years now, and they're still nagging about it, so i tried another angle this time.

"well, i'm not currently planning on having anymore kids, so... yeah. we're not going. if i change my mind at any time, then we'll go. but the way things stand right now, i don't really see the point."

"oh. well, if you're not going to have any more kids, then there's really no point. no problem."

then on to the physical exam. he checked asher's ears, nose, and throat. then he laid asher down to check his stomach. he's feeling around and poking around and he says, "does that hurt?" to which asher replies, "nope. it doesn't hurt."

so, curious, i peaked around him and looked where he was checking. and laughed a little bit. and said,

"oh, yeah. i forgot to mention. the hard lump by the scar on his stomach... that's his pacemaker."

"oh, good! i was wondering what that was!"

and we laughed.

well, the fellow and i laughed. asher just laid there and asked about stickers.

so then doc came in. he complimented me on my boots (suede leopard print with 4" heels. yes, i rawk!! haha) and said this,

"well, his lymphocytes are low, but they seem to be working well enough. it could just be that he is at the very bottom end of normal for that, we're not sure. whatever it is, it doesn't seem to be a problem for him right now. but i think we need to continue with yearly monitoring in case it becomes a problem down the road at some point. how does that sound?"

what can i say? i agreed to that. because he actually gave me some information that i can use. for three years now it's been, "i dunno. see you in six months." instead, he told me the situation, and recommended yearly monitoring. i can live with that.

so now i have to find a planner for 2012, and learn what i can about lymphocytes. fun times! haha

and now for something completely different...

2011-02-08T13:50:00.000-05:00

no goofiness or reflections today, i'm afraid. sigh...

for the last few days, asher's been coughing pretty badly. wet and crackly, and he's been pale, but it wasn't too serious. just a cough. i figured it was a little cold and it would go away.

it didn't.

in fact, it got worse.

today is his second day home from school. he hasn't been able to get a good sleep for the last couple nights, his heart has been hurting/burning, and he's very snuggly and cranky.

today, he was also puffy and blue.

delightful.

so, we went to see dr b this morning. at first, asher didn't want to go, but wanted to see his BFF B at the hospital. then he wanted to see dr w. i had to literally pull him into dr b's clinic. sigh...

but once she came in to see him, he answered all her questions and breathed deeply and coughed when she told him to, and in the end, he was diagnosed with

a nasty chest infection.

she put him on amoxil for 10 days (anyone else would have gotten 7 days, but it's asher, so it's 10). i'll be getting that filled while i'm at work this evening, and we'll get him all fixed up and better for his immunology appointment next week.

(oh, yeah. we see immuno at sick kids next wednesday. i'm not expecting anything to come of it. in fact, i hope they'll just discharge us, since if he truly were immuno-compromised, he would have gotten way sicker way more often since starting school. but that's just my opinion here.)

anyway, right now he's lounging on the couch with his transformers pillow, monkey blanket and Chickie. he's pretty blue and puffy and short of breath right now...

ugh. i hate it when he's like this.

please pray/cross crossables/send good vibes that the antibiotics will do the trick and he'll be back to his usual spunky self in no time, with no nasty complications or trips to emerg/cardio. if anything does happen, though, rest assured, i'll let you know.

NNNNNNNNNNNOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! a true story.

2011-02-07T18:58:00.000-05:00

so i was getting asher into his jammies tonight, and he...

{gulp}

took his nose off.

and then dropped it.

well, i'm not too proud to admit that i. freaked. out. i mean,

HE NEEDS HIS NOSE, PEOPLE!!!!!!

i looked everywhere!! under his foot, up his sleeve, in a book...

but it was gone.

GONE!!!!!!!!

NNNNNNNNNNNOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!

"Asher!!!" i cried, "you need your nose!! help me look for it!!! i can't find it!!!!"

and he laughed. "mwahahahahaha!!!" (ok, maybe i imagined the evil laugh... but he was definitely laughing at me.)

"nosey!!" i wailed. "i can't find you!!!! sneeze if you can hear me!!!!"

but then i realized...

"but... but... you can't hear me!!!!! because you're not an ear!!"

and i cried a little bit.

and asher laughed a lot bit.

and then

and then

he pointed out...

that his nose was still on his face.

{hangs head in shame}

an open letter to my sweet, sweet Asher.

2011-02-04T10:16:00.004-05:00

sigh.

oh, my sweet boy, i just love you so much.

i love your smile and your belly laugh and the way your eyes twinkle. i love your crazy hair and your goofy sense of humour. i love the fact that you're the "little spoon" at bedtime when we cuddle. i love our "travelling kisses" and how i don't know where you came up with that name, but when i kiss you on the cheek, you wipe it off and rub it on your chest and say "de butterflies are in my heart now, mommy." i love your hugs, or rather, i love how you run up and launch yourself at me and grab onto me and squeeze every bit of love in that heart of yours into my open arms... or my thigh... whatever you can reach at the time.

i love your strength. i love your courage. i love that you have survived so much and you carry on with so much light and joy. i love that you learned to say "guten tag" to dr w, and that you were thrilled to know that Kraftwerk (your favourite band) are german, too.

and as much as i hate to admit it...

i love your scars.

honestly, littlest man, i think they're beautiful. they tell a story. they tell your story. each scar, from the tiniest IV scars on your hands to the zippers all over your torso, each one is a badge of honour from yet another battle you survived.

but oh, my littlest man, i hate

hate!!!

that you have had to go through all of this. the surgeries and the appointments and the caths and the tests and the IVs and the intubations and the broken ribs and the admissions...

i think of your broken heart,

and my heart breaks.

i know all this is hard for you. believe me, i know. i've seen it in your eyes. i've heard it in your voice.

i'm glad you're so strong. and i'm glad you know that mommy is always right there with you, fighting this horrible battle alongside you. and when you're tired and weak, i'll fight for you. i promise.

but that being said...

i've told you before... during a couple brutal admissions... sigh...

if you ever get too weak and tired...

and you just. can't. do it anymore...

i'll understand.

i've had to let you go so many times already. it's not right. no one should ever have to let go of the child they brought into this world. but i've done it. i've handed you over to strangers, and ultimately, i have handed you over to God.

the thought of losing you haunts me more than you will ever know.

the thought of losing you hurts me more than you will ever know.

i don't want to lose you.

i don't want to lose you i don't want to lose you i don't want to lose you i don't want to lose you.

and honestly, the way you live your day-to-day life, i probably won't any time soon. and that makes me happy. that heals me and holds me and carries me through. and i know that it does the same for you.

you're a beautiful person, little man. you're like... gloopy globs of glitter glue smeared across the shiny side of crumpled tin foil. that's how sparkly and shiny you are. you're the painting i hang on the fridge, the stickers on your shoes, and the night light that scares away the monsters under the bed.

please stick around for a long time...

because those monsters under the bed are nasty.

CHD. a most beautiful gift.

2011-02-01T10:53:00.000-05:00

yes, you read that right.

CHD is the most beautiful gift.

now, don't get me wrong. i invented the word "freaxious" for a reason. it's how you feel when you agree to an experimental shunt being placed in your newborn's heart. it's how you feel when you consent to strangers freezing your baby to death so they can slice and dice his heart. it's how you feel when a doc says, "on paper, this will work." it's how you feel when a cardiologist says, "i'm frightened now, to be honest." it's how you feel when your child turns blue and grey for no apparent reason. it's how you feel when a doc says, "yeah, this can't wait. i'll see him in my office tomorrow."

so, yeah, sometimes (ok, a lot of times) CHD really, really sucks.

but then again...

when i had blithe, i missed her first steps. she'd been cruising around and using chairs to walk for so long (literally, months!!) that it occurred to me one day that she was walking, and she had been doing this for days, and i hadn't even noticed when she started. (yes, bad mom, i know. haha)

but here's something:

i missed asher's first steps, too. same deal: he'd been cruising on furniture and playing with blithe and bram at the coffee table and holding on to his little riding car for a few weeks, and one day it occurred to me that he wasn't using anything else to walk anymore. he was just toddling around with his little backpack and laughing and babbling away. i have no idea when he started walking.

but my point is... asher walks!!!!!

here's something else:

so, asher doesn't eat much. he'll eat the inside of his sandwich, or half his banana, or drink some of his milk...

but look:

asher eats. he'll eat the inside of his sandwich, or half his banana, or drink some of his milk!!!

i know we, as moms, tend to complain about dirty laundry scattered across our 4-year old's bedroom floor. it's annoying. i mean, seriously, how hard is it for them to put their clothes in the hamper?

but CHD makes me stop.

and look at the dirty laundry scattered across my 4-year old's bedroom floor. and smile. because it's not ~~all that~~ hard for him to put it his clothes in the hamper.

in the grocery store, when he's throwing a tantrum because i won't let him sit in the basket of the cart, but (terrible mother that i am) i make him sit in the seat so that he doesn't run off and so that i'll have room for the groceries, i get frustrated with him.

but CHD makes me stop.

and sit him down in the seat of the cart instead of the basket. and smile at my own frustration.

in the hospital cafeteria last week, everyone saw two little kids dancing.

my friend and i saw dozens of little miracles in those two little kids dancing.

asher's got crazy hair and a wicked short temper. he shrieks and only dogs can hear him. this morning, on our way to his classroom at school, he cried and told me that i'm mean and i don't like him anymore because i didn't zip up his coat when we left the office. yesterday, he threw a dinky car across the living room. on saturday night, he turned grey in his sleep.

but!

last week, asher got a hair cut, and he looks so grown up. and he got a time-out for yelling at me. and he shrieks when he's happy. this morning, he went to school. yesterday, he was playing with dinky cars. on sunday morning, he woke up.

yes, thanks to CHD, i live in fear of the day a cardiologist discusses turning off asher's pacemaker. and thanks to CHD, my baby's torso is covered in scars. and thanks to CHD, i worry that i'll brush off the wrong symptoms because, meh, i've seen him worse.

but thanks to CHD, i breathe through the tantrums. i enjoy walking him to his classroom. i live for half-eaten lunches and pictures on the walls (literally, on the walls... he isn't always a fan of paper).

asher should be dead 15 times by now. because of CHD. this disease has brought more pain and fear and suffering into our lives than should be allowed by nature. but this disease has also brought more miracles and love and life into our lives than should be allowed by nature.

today is the first day of CHD Awareness Month. so i wanted to focus on the good that has come our way because of asher's heart. it's too easy to get stuck in the crap, to focus on the surgeries and the meds and the appointments and the complications and the fears and the dread and the anxieties and the nausea. and yes, i'll be happy when CHD doesn't exist anymore, or when the course for HLHS is no longer "palliative" (meaning, "let's try to keep him alive as long as possible, but it's still terminal."), or when everyone i know and everyone i have yet to meet gives money to CHD research, or when no more families lose their babies to the most common birth defect, or when CHD no longer kills more children than all childhood cancers combined. i will be deliriously happy when that happens.

but in the meantime, CHD has taught me this:

CHD has taught me to enjoy life. to cherish the little things. to see the bigger picture.

CHD has taught me

to live.

How CHD messes with your head... or maybe just how Asher does... hard to tell sometimes...

2011-01-31T00:18:00.003-05:00

So, last night, asher was grey.

And i remembered another time when he was grey in his sleep.

Last spring.

When his heart rate was in the 20s and 30s.

As soon as i saw him, i flashed back to those nights. Those scary, scary nights.

Those freaxiating nights.

Those heartbreaking nights.

I didn’t think he’d survive long enough to get the pacemaker. I don’t think i ever put that into words, either spoken or in writing, but that’s what i was thinking at the time.

And so, when i saw him last night, sleeping, grey...

I thought about taking him in to emerg. Because... you know... what if...

His heart wasn’t beating fast enough...

But i looked at him, lying there, so grey, so peaceful.

Not short of breath,

Not sweating,

Not indrawing beneath his ribcage,

And rousing when i moved his arm.

And i thought... well, i can rouse him, so that’s good... and he doesn’t seem distressed right now, so that’s good...

But he is grey.

And he really shouldn’t be.

I called amazing dr b because, honestly, i didn’t know what to do. Should i take him in? Should i just brush this off? He can’t have a slow heart rate anymore. It will always be at least 80.

But then i thought... what if his pacemaker isn’t working properly???

But then, wouldn’t he be sweating? Or short of breath? And un-rouse-able?

But he’s so grey.

This is what this life does to a mom, after a while. He’s been through so much. And i’ve been through so much with him. and i’ve learned a lot. I’ve learned to listen to my instincts, but i’ve also learned all the clinical things to watch for.

So now, whenever he has a symptom, i begin to wonder,

Should i take him in for this? I’ve seen him like this before, and it was bad... but he doesn’t have any other symptoms. Just this one. So should i take him in?

I just don’t know anymore.

It used to be so easy. When he was very young, if he had any symptoms at all, even “just” a runny nose, i took him in. And they always found a problem. Which always ended up messing with his heart in one way or another.

See, he’s had all these symptoms so often, for so long, it’s gotten to the point where i’ve built up a tolerance for some of them. Even his colour wheel, i’ve become so accustomed to it... I can brush off pale (for a few days). I can tolerate blue. But any shade of grey makes me want to vomit.

So what do i do? Do i listen to the same advice i gave my close heartmom friend, “better to be paranoid than indifferent, because the paranoid mom will be right once in a while.” But what if i’m reacting to something that really is nothing? And now that everything is different post-fontan...

What if i’m brushing off all these things, and they actually are something... but “i’ve seen him worse, so, meh.”

Sometimes, I don’t know how to tell anymore.

On the other hand, i’m tired. Maybe some rest. Or better (and more realistically) yet...

Caffeine!!!!

(have i mentioned i’ve become hooked on lattes?? It’s true.)

would i have named my son asher if i ever thought he'd turn the colour of ash?

2011-01-29T21:46:00.001-05:00

sigh...

that's right, folks. asher is, as i type this post, sleeping.

and asher is, as i type this post, grey.

he's not distressed or anything. in fact, his cheeks are nice and rosy and pink.

but the rest of his face...

nose, forehead, around his mouth...

grey.

and he has been for about 40 minutes now.

the first couple times i checked on him, i turned the light on in his room, and he didn't move. this time, i turned on the light and moved his arm off his face, and he grumbled and turned onto his back. so he can be roused, so that's a good sign.

but still...

he's grey.

but that's his only symptom.

{calls amazing dr b}

k, so it is now about 20 minutes after i started typing this post. i have (if you were paying attention, haha) called dr b.

some quotes from the conversation:

"your instincts aren't usually wrong, heather." "yes, i know..."

if you're concerned enough to call me, you're concerned enough to take him in.

k, i'm gonna say, wake him up, and if he pinks up, then he's probably ok. if he doesn't pink up when you wake him, you're gonna have to take him in.

so, while still on the phone with dr b, i checked on asher again. and he was pink...er. still a bit grey-ish, but not like earlier. so i (probably) won't be taking him in tonight.

that being said, i have to pop up to cardio on monday to return the holter. and i'm going to mention to someone that he was grey tonight. of course, dr w won't be in the clinic on monday, so pray/send vibes/cross crossables that dr r will be around, and i can mention it to him.

sigh.

a quick update about clinic yesterday...

2011-01-29T21:12:00.000-05:00

clinic was actually pretty good, i'd say.

sorry, i just don't have a long post in me tonight. so i'm just going to do the coles notes version of the day, and you can fill in any jokes and wisecracks you want.

sats: 95-96%; BP was normal; HR was 110
height: 97 cm (3'2" - he's almost an inch taller since october!!!); weight: 15.4 kg (approx 34 lbs)
ECG looked fine
asher's re-obsessed with Thomas trains.
asher greeted his cardio with "guten tag," which amused and delighted her. see? she's lovely. :)
resident was inappropriately dressed, and put things like puffiness in quotes... because it's not a medical term. but i had to explain the difference between swelling and puffiness for her. (for non-medi/heart types... one is an accumulation of blood to an injury/infection site, the other is the result of fluid build-up caused by insufficient heart function.)
dr w agreed that asher's latest symptoms are the cardiac after-effects of a virus, but as long as they resolve themselves in due course, he's ok.
asher was not puffy, as he had been on monday when dr w booked the appointment. of course. haha but this also means that his symptoms are resolving themselves in due course, so he's ok.
dr w agreed with dr b's decision to prescribe ranitidine to treat the reflux.
dr w was concerned about asher's report of his "heart going really fast" the other day. so she ordered a holter, and we'll see from that if his pacemaker needs to be adjusted.
dr w discontinued the aspirin. she said that, because of his age and the fact that he's in school, he has a higher risk of a bleed from getting bumped, than he does of developing a blood clot from being sedentary. we will probably have to resume bloodthinners when he's older, but for now, he doesn't need to be on aspirin.
discontinuing the aspirin is a major milestone for asher. he's not on any cardiac meds anymore!!!!!!

sorry that this wasn't up to my usual standards of quality writing and verbose-ness (haha, i just made up a word because i couldn't think of the word meaning "wordy" HAHA). i've got other things on my mind tonight...

don't worry... there's another post in the offing as i type...

for the newer readers, "freaxia" is a horrid combination of fear, dread, anxiety and nausea. blech.

2011-01-27T23:31:00.000-05:00

it's 14 hours till asher's cardio appointment.

and we weren't supposed to see them till april.

so, asher's got all these symptoms. now, i'm trying not to say "this is the problem"... even though i'm bracing myself. i mean, i remember paula quizzing me and insisting i learn this list of symptoms before taking asher home after the hybrid. i've been watching for these exact symptoms for over four years now.

and now i'm seeing them again.

i always feel this way before an "unscheduled" cardio appointment. you know the ones... you aren't scheduled for anything, but then the doc says, "why don't you just bring him in... let's get him in this week."

and for those of you who think that's fantastic, that we didn't have to wait...

here's the thing about health care in ontario:

if you can wait, you do. if you can't, you don't.

(and i'm not trying to start a debate about the healthcare system here. i'm just saying, that's the rule they go by.)

but here's what's really getting to me tonight:

what if they find something wrong??

or...

what if they don't find something wrong???

i know something's not right with asher lately. i could guess, but i'm not going to. i refuse to allow myself to do that. i simply refuse. because then my mind goes to all sorts of unhealthy places, and i just don't want to do that right now.

so, i'm trying to decide what's worse. i mean, if they find something wrong, that sucks, but they'll deal with it. and we'll get through it. but still... it means that something is wrong.

but if they don't find something wrong, then... what?

this, gentle readers, is what freaxia is all about.

and so, once again tonight, i am trying to breathe and smile/laugh my way through this. a close heartmom friend and i were chatting tonight and laughing about something, and it was good to distract myself, laugh at myself ("like, seriously?!?!" HAHAHAHA)... it took my mind off things for a while.

so, yeah. breathe. smile. hold it all in the Light. some ice cream doesn't hurt (esp if you've lost another 7 lbs, bringing you down to your lowest healthy weight ever). and smile. breathe. and then smile. and just for good measure, breathe some more.

and carry on.

well, today could have really, really sucked...

2011-01-25T23:54:00.001-05:00

yeah, today could have been better on some levels... but it's nothing a smile and a giant bag of salt & vinegar chips can't fix...

tonight, i filled asher's dad (aka, ed) in on what the principal (mrs h) had told me this morning. at first he laughed (because yes, it is kinda funny...), but when i reminded him that asher accused someone of abusing him because he's mad at her and doesn't like her... he stopped laughing, and said he'd talk to him tonight. (i was working, so he had the kids this evening.)

and i spoke with asher at bedtime...

i had told ed that the whole thing was a "secret" because asher didn't want to hurt anyone's feelings. so he and i each told asher that mrs j (the EA in question) had been sobbing in mrs h's office when she found out what he'd said.

when asher heard this, he became very sad.

so ed took the kids out tonight to pick up a gift for asher to give mrs j's baby (friday is the last day before her mat leave).

and when asher said his prayers tonight, he prayed, "dear God, thank-You for this lovely with me, mrs e, mrs b, mrs g (his EA, ECE and teacher), and please help me to cheer up mrs j."

tomorrow morning, i'm taking asher in to school, and he's going to apologize to mrs j for saying all this about her.

and we both told him that if he ever pulls this ~~crap~~ again, he's going to be in a ton of s*** trouble. (neither of us used those crossed out words... well, i know i tried not to. and i doubt ed did, either... but i know i was definitely thinking them. haha)

and let's see, what else happened today...

well... my rear tire blew on my way to work. literally, 15 feet from the parking lot. nice.

and then, in the middle of trying to give a customer her parcel, my system shut down. there was a message on the screen about a system error... and it just... shut down. and of course this is when everyone in st thomas decides to pick up their parcels. haha. well, it actually wasn't funny at the time. my system was down for at least 15 minutes. i still don't know what happened... but it would reboot, then shut down. then reboot. then shut down. i'm not kidding... this happened four times. and the line-up getting longer and longer.

sigh...

ok, yes, there was more that happened today, but i won't go into details... because my point, gentle readers, is this:

sure, you can't control what happens sometimes. you just can't.

but

you can control how you respond to it.

i'll admit, at one point this evening, i just wanted to cry when i thought about asher and the EA, and my truck, and a couple other things. and then...

a customer arrived, so i smiled and helped them out...

and suddenly, i didn't want to cry anymore.

yes, i was still thinking about everything that happened today. and yes, it's a lot of stress smooshed into one day. but...

i spent this evening reminding myself to breathe (i have a tendency to hold my breath when i'm stressed). and i smiled at my customers and joked with a few of them... and told my boss that i'll take any extra shifts she'd need me for over the next little while (thereby tackling two of the stressors at the same time)...

and i remembered that i can't fix my tire when i'm working. and ed can talk to asher, and i'll take the littlest man to apologize to the EA tomorrow. and the computer (eventually) righted itself, and since ed and the kids would have to give me a ride after work, i'd get to see the kidley-winks tonight, and i don't have to pay for prescriptions so dr w can prescribe anything she wants on friday and i won't panic about the cost...

and i remembered to breathe...

and hold each situation in the Light...

no specific prayers. just holding them up. because i don't know how they should be resolved. i just want God to do whatever He's going to do, but keep us all alive in the meantime...

and you know... i got through tonight. and i'll get through tomorrow. and the next day. and the next.

it really is amazing what you can get through if you just breathe and have a little faith...

so much has happened since the last post... don't worry, some of it's great!

2011-01-25T14:02:00.001-05:00

this is what happens when i promise to post more often. God hands me more to post about. haha so here we go:

yesterday morning, i checked my email ~~for the eighth time~~ randomly, and there was an email from DC. you'll remember that she is working on a book about my littlest man. she and i have spent many hours talking about asher's journey, and now that that portion of the research is done, she wants to get in touch with some of the doctors and nurses who have "played an integral part in caring for asher (and you)." so she asked me who she should talk to... (sorry, christyne... that should say, "she asked to whom should she speak." teehee)

which docs and nurses should she talk to???? here's the list:

dr b, our amazing paediatrician (and dear friend)
dr russell, our toronto cardiologist
dr j, in london emerg
dr g, in london emerg
dr p, who is actually a paeds metabolics specialist, but was the attending in emerg that first morning when asher arrived.
pepy and buffo. because you can't tell asher's story without talking to them.
dr b, the toronto cardio who did all of asher's stents, some caths, and has been the attending on the ward for a few HSC admissions
the first cardio we saw in toronto when asher was 8 days old
dr f, asher's nephrologist
dr a, who knows us very well. he got asher the GJ-tube, we've seen him in emerg, he's been the attending on the ward during admissions, he has sedated asher a couple times, i dealt with him in his administrative role... and the list goes on. (those of you in the know are peeing yourselves right now, aren't you??? HAHA)
sarah m, the nurse who was there when asher first came to london emerg, and whom we saw in emerg several times, and who did her NP training in the cardio clinic, and who is now the enteral feeding NP. yup, lots of dealings with her over the years.
Jenny and Paula, the single ventricle NPs at sick kids. they had our number memorized and would return my pages with just a "hey heather, what's he doing this time?" and a sigh when i filled them in.
vicky and elaine, our home care nurses. they were amazing. and i mean, a. ma. zing. asher and i would both be dead if not for them. they were excellent at their job, and truly cared for us. they're both absolutely lovely, and asher's story is not complete without their input.

as i finished up this email to D, i realized that in calling all of them, she would run into a problem: patient confidentiality. which is a good problem, don't get me wrong. i'd hate to think that any random person could call up one of asher's docs and get any and all information they wanted. so hooray for confidentiality!! on the other hand...

it does pose a problem to someone writing a book about my littlest man.

so, i have been chatting with some london docs and sarah the NP to let them know about the project, and that i have no problems with them speaking with D. i also emailed dr f just now, and i spent some time this morning speaking with vicky, as well. i also emailed pepy and buffo last night, and as i type, i am on the phone paging the single vent NP on call (not sure if it's jenny or paula. haha) so that's that issue...

but, in a tangentially related note...

when i popped in to talk to dr welisch yesterday, she asked how asher is doing. "well," i thought, "i'm just waiting for him to get bad enough to bring in, but he does have some symptoms, and she did ask and she is his cardiologist..." so i told her. i told her about the flu the other week, and the paleness and blue spells and puffiness and irritability, and she said,

"well, why don't you bring him in on friday and we'll do a quick check." [insert wave of nausea]

and of course, we book the appointment, asher comes home from school, and...

he's hiccupping.

"so?" i hear you asking.

well! those "in the know" about wonky heart and gastro stuff know that hiccuping can either be nothing... or it can be something. well, not "something" in and of itself, but a symptom of... wait for it...

reflux.

(and angina, but we're not going there right now.)

at first i brushed it off. i mean, sometimes i get the hiccups and i don't have reflux.

but then it happened again a little while after he had snack. so, i decided to just ask him how he's feeling. not lead him or put ideas in his head. just a little, "hey, dude, how are you feeling right now?"... you know... just to see...

and hoping it's nothing.

he said,

and i quote,

"not good, mommy."

[insert wave of nausea]

"what do you mean? where do you feel sick, sweetie?"

"my heart hurts, mommy."

[insert wave of nausea]

ok, so now i'm going to be a little more specific in my questions:

"does your heart feel tight? like it's being squeezed?"

"no, not like dat."

"does it feel hot? like it's burning?"

"yeah. like it's burning."

now, ordinarily, reflux/heartburn is not a big issue. and a lot of heart kids (and adults with heart disease) have reflux.

(ever wonder why, by the way? there's a spot at the top of the stomach, right where the esophagus joins to it, and it's called the cardiac zone. when a heart is failing or distressed or recovering from surgery, the heart muscle becomes enlarged, just like any injured muscle. when the heart becomes enlarged, it bumps up against this spot on the stomach and annoys it. the problem is, this spot is right beside the valve - or more correctly, the sphincter - that allows food etc into the stomach and then closes to keep stomach contents... um... contained... in the... stomach... wow, that's pretty redundant there, isn't it? anyhoo... when the cardiac spot on the stomach is being bothered, the sphincter there has a hard time closing properly, which then allows stomach contents to go shooting back up the esophagus. because stomach juices have a pH level of about 2 - it's a shockingly strong acid!! - and the esophagus is not designed to withstand that sort of assault, the acid burns the esophagus. and this happens in the vicinity of the heart... hence the term, heartburn. and there you have it, folks, Reflux 101.)

and so, ordinarily, i wouldn't be worried about reflux, even in asher. but... when i look at the other symptoms... yeah... i'm not freaking out... i wouldn't even say "worried," per se... but i do think i made this appointment with cardio just in time.

sigh.

and let's see... what else has happened today... ah yes!!

i spoke with the school's principal this morning, regarding the "incident" from friday. she has looked into it, and apparently...

the EA in question...

had no contact with Asher on friday.

other than in the afternoon when he saw her and flipped out. but she didn't deal with him in the morning.

but...

it turns out...

asher doesn't like her, and he's angry with her.

"why?" you ask?

because, you see, she takes him to the bathroom when she has him. and asher... doesn't always want to go to the bathroom.

and when he's irritable like this...

it's best not to mess with him, apparently.

because he'll tell people that you pushed him.

so, there was no incident on friday. but we think we have an idea about where this came from:

you see, when asher needs to pee, even if it's an emergency and his bladder is about to explode, he will take his sweet time getting to the little boys' room. he'll stop to chat with people, play with toys, whatever. but this EA at some point must have put her hand on his back and tried to guide him to the washroom... when he didn't want to go. and so, "of course," in his mind, this is pushing.

and since he's mad at her, he told his own EA and me that he was pushed.

which, of course, leads to an investigation and all kinds of things.

sigh...

so, it would seem that my sweet little cherub... well, i'd say he still has a halo, but maybe it's a little tilted, dented and tarnished. haha-ish

so, asher and i are going to be having a little chat this week. because this behaviour is absolutely NOT OK. and yes, disciplining him is not easy right now... i mean, how do you discipline a kid who'll have a heart attack if he cries too hard?? but i'll figure something out, because this sort of thing cannot. happen. again. it just can't.

so that's what's new in our little corner of the universe today... (hopefully) there won't be anything to report until friday afternoon after cardio. (but you know i'll post if necessary. haha)

k, it's been a while...

2011-01-22T17:57:00.001-05:00

yes, yes, it's been a while, and i haven't posted a "real" asher update. so here we go.

a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...

his sats were 92%!!!!

this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...

not so much.

his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.

when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.

the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.

he recovered nicely.

and i discovered something interesting: apparently, since i work at shoppers...

I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!

how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)

but back to asher...

since he had the flu the other week, he... um... yeah... hasn't been great.

in fact, i'm kind of playing chicken with him right now...

for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...), and he's puffy, and well, a little irritable. it's not super bad right now, not quite at the point where i would take him in to be seen... but... i hate to admit this, but... yeah... he's getting there.

it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.

and there's another thing...

i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.

i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.

the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.

i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.

the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.

so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.

i'll try not to go so long between updates from now on.

but since the universe doesn't revolve around asher and the rest of us here...

i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.

last night as i lay cuddling...

2011-01-04T22:33:00.001-05:00

every night at bedtime, asher wants me to cuddle him to sleep.

it's my favourite time of the day.

see, the older kids slept with me until, well... asher. and even still, if bram is going to nap, i have to lay down with him (oh, the hardship). blithe still sneaks into my bed at night sometimes. why, just the other morning, i woke up with both of them in my bed. i have no idea when they joined me, but it was a nice surprise.

but asher... when he was a baby, he slept with me for the first week. and then... he was lying on a tray hooked up to more machines than you can imagine for several weeks. then he came home with a feeding tube and severe reflux and broken ribs and well... co-sleeping didn't happen. at all. ever.

until a few months ago, when he decided that he wants me to cuddle him to sleep.

gosh, let me think about that... um, YEAH!!!!

so, last night, he said his prayers and we cuddled up. as we lay in his bed spooning, just as we were both drifting off to sleep,

i could feel his heart beating.

lub dub, lub dub, lub dub...

ok, really, it's more like lub lub lub lub lub.

(and for those who don't spend as much time with cardiologists as we do... "lubdub" is the real medical term for the heartbeat. see? this blog is entertaining and educational! haha)

anyway... i could feel asher's heart beating. a beautiful, strong, steady rhythm.

and it got me thinking... as things often do with this littlest man of mine... how miraculous this little heart of his truly is.

this little heart of his...

deformed...

scarred...

ripped apart...

put back together in a different way...

wired up to a battery pack...

it shouldn't work. it just shouldn't.

and yet, there it is.

lub lub lub lub lub

pumping his blood through his little body... which is also scarred... and small for his age...

and keeping him alive.

and keeping him alive.

it's like it doesn't know that it shouldn't be able to do this. to beat. to beat this often. to beat this strongly. to beat this regularly.

to beat at all.

and yet it does. a steady rhythm. a constant rhythm.

a beautiful rhythm.

a miraculous rhythm.

a little boy's rhythm.

my little boy's rhythm.

i don't know how long i'll have this rhythm in my life. it hurts to know that, but it's true. but right now, i also know

that this little rhythm of his is beating away. at least 80 beats every minute.

and it's just so. very. beautiful.

as 2010 becomes 2011...

2010-12-31T23:59:00.005-05:00

i'm thinking back over this past year.

and, um, yeah.

wow.

it began with an ironic twist. having told asher that i refused to bring in the new year in the hospital with him, i ended up bringing in the new year in the hospital... by myself. haha and thus began a(nother) gut-wrenchingly, heartbreakingly, freaxiating, spellbinding, awe-inspiring, breathtaking year.

in january, we finally tasted freedom. asher's vagus nerve had healed and had been eating on his own, sufficient to sustain him, for a couple months. he had even been taking his meds by mouth. and one day, in the middle of the month...

asher walked into the living room and said,

"mommy, i not need my tube anymore. you take it out now."

he sat so bravely as i pulled it out and covered up the site. he smiled and showed off the bandage to blithe and bram. and then he went to bed. and in the morning,

the hole had closed. and all that remains of that (looooooooong) period of asher's life, the only reminder of that struggle,

is a scar on his stomach. and the memories. and the feelings of relief and pride at having overcome such a huge struggle.

strong work, littlest man. {{hugs}}

and then came the spring.

the fontan. the chylothorax. the bradycardia. the fainting spells. the pacemaker. the infection. the fat-free diet. the uber high-fat diet. UTI. (i was going to link to everything here, but it's too many posts, so i'm just going to tell you to read the posts from march, april and may. click on the months here, if you're interested.)

ok, so the UTI and FTT and "butter and whipped cream diet" was at the end of may. and since then...

asher has been out of hospital.

asher started school!!!!!

asher learned to write his name.

asher has lived the life of a perfectly normal, stable, beautiful boy.

aka, tasmanian devil.

with a battery pack.

and so, as this year comes to an end and a new year begins, i hope and pray that our new-found normalcy and stability continues. but, if it doesn't, i know that we will continue to trust and rely on God to give us what we need to get through the challenges we face, whether they are health issues, financial issues, or other unforeseen issues that can arise in day-to-day living. and i hope and pray that you will also know a year of peace, joy, laughter, love, and beauty.

even if it's a wonky kind of beautiful.

happy new year, everyone!! thank-you so much for your love, support and prayers over the last year. let's all try to be safe and joyful this year, shall we?? :)

christmas 2010

2010-12-28T22:22:00.000-05:00

yes, this post is late, and no, i don't have any pictures. :( i've lost my camera, which makes me very, very sad. so you're just gonna have to imagine all that i'm going to share with you. which is, without a word of a lie, miraculous.

the kids and i were gifted with the most unbelievable christmas ever. "santa" came. and stayed until "he" had delivered 3 garbage bags full of gifts. the boys got all the transformers they had asked for and batman pyjamas (complete with cape). asher got a new elmo stuffie, an elmo watch, elmo duplo, elmo play-do, and more that i can't even remember, there was so much stuff. bram got lego galore - pieces, kits, and books - and again, a ton other stuff. blithe got all things bieber - sheets, singing doll, book, CD. she got a lalaloopsy doll and an easy bake oven. and again, there's more. literally, everything they asked for. ever single thing.

for the four of us, we were given 8 movie passes, snacks for our nights out, and 2 free blockbuster rentals.

i got more for this christmas than i have received in at least the previous 3 years combined. i don't usually ask for much, a couple little things, and that's it. i really don't need anything. i got gift cards for chapters and starbucks and shoppers (my happy places, in case you're wondering, haha). i got a beautiful card and note from "santa" (which i now carry in my new purse from the kidley-winks). it was...

stunning.

we were also given 6 boxes of dry goods for the panty, and grocery gift cards. so i don't have to worry about that for quite some time. i can't tell you how much that helps us.

and then there's the stuff from my parents, my brother and his girlfriend, and the beautiful picture of my grandparents (my grandfather passed away in October 2009, while asher was admitted with H1N1). everyone in my extended family (other than one of my uncles and his wife) were at my grandmother's for brunch, including my aunt's husband and my cousin's husband, who got the day off work for the first time in over four years. everyone was there, and it was beautiful and loving and warm and joyful. truly miraculous.

i was also blessed with the opportunity to gift one of my aunts with something small (but very cool... she's lucky she got it, since i loved it so much, haha), and a note which made her cry (in a good way).

this was truly the most beautiful christmas i have ever experienced, and i am holding this close to my heart.

i hope your christmas was just as beautiful as ours was. i hope you experienced all the love, grace and peace that is the spirit of this holiday.

on this day in history...

2010-12-10T12:46:00.000-05:00

i took asher to our local emerg. he was having trouble breathing. i thought he would just need some oxygen and then he'd come home.

instead, we were sent to london.

where dr pepelassis (aka, "pepy") checked out asher's heart.

"usually babies with this condition," he said, semi-panicked, "are operated on right after birth. he's eight days old now. it's too late. he's going to die. you have to be strong now, so pull yourself together, and come back and say your good-byes."

he called SickKids anyway, and they told him that if he could get asher stable enough for transport, that they would take him and "see if they can try anything."

in toronto, i was drawn a picture of a normal heart.

and then i was drawn a picture of asher's heart.

and there is a lot of stuff missing in asher's heart.

on this day four years ago, the cardiologist in toronto went over our options:

3 open heart surgeries. one right now, one at six months, one at two years.
very new (read: partially experimental) but gentle closed heart surgery now, massive open heart surgery at six months, and open heart again at 2 years.
transplant. meaning weeks or months on by-pass, and the risk that asher might not live long enough to get the new heart.
comfort care. (for those unfamiliar with the term, it's pain management and nothing else.)

that was four years ago.

and right now, as i type this, asher is watching Roly Poly Olie, and drinking juice with his fingers. he sticks his hand into the cup, then sucks (noisily, i might add) the juice off his fingers.

it's been a long four years, to say the least.

i'm hoping we'll have many, many more.

and today is another special anniversary. one of asher's little heart buddies, Yale, is celebrating his heart anniversary today. two years ago, Yale was given his new heart. and believe me when i say, he hasn't looked back!!

so congratulations, yale and family. :) and thank-You, God, for saving and preserving my littlest man's life over the last four years.

it's a sad day today.

2010-11-29T16:11:00.002-05:00

my post this morning was inspired by a post on Adventures of a Funky Heart, written by Steve Catoe. the entire blog is devoted to CHD, providing tons of information about research, treatment, goals for the future.

Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.

i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.

today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.

to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.

please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.

A Cure for Heart Defects!

RIP, Funky Heart. our broken hearts are breaking. you will be missed.

66 years ago today...

2010-11-29T09:28:00.002-05:00

on 29 November, 1944, Dr Alfred Blalock, Dr Helen Taussig (yes, a woman) and Vivien Thomas (a black man) performed the first Blalock-Taussig shunt operation at Johns Hopkins in Baltimore.

the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:

pulmonary stenosis. the pulmonary artery carries de-oxygenated (blue) blood from the right side of the heart to the lungs. with PS, the opening to that artery is too small and restricts blood flow to the lungs.
VSD, a hole between the two pumping chambers. this allows blue blood to pass over to the left side of the heart and mix with the red blood and travel out to the body.
right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
overriding aorta. this exacerbates the VSD and allows more blue and red blood to mix and travel to the body.

at this point in history, in 1944, there was no open heart surgery for these babies yet... that would come much later. and actually, up until this day, there was nothing at all that could be done for babies with severely wonky hearts. nothing. this procedure was the first of its kind, anywhere, ever.

if you're interested in learning more about the surgery, including how to do it, click here. this will take you to a site which will teach you about ToF, and you can do the surgery yourself, in a cyberish kind of way. it's amazing, it really is!

this procedure is not what Asher had. Asher had a modified (or reverse) BT shunt, which went from his MPA (main pulmonary artery, right before it branches off to the lungs) to his proximal innominate artery, allowing most of the blood to by-pass his lungs and go out to his body.

but without this first procedure 66 years ago, Asher would never have survived beyond his diagnosis. there would have been no hope for him at all. and yet...

here he is.

almost 4.

(and for the record, i know of many people with ToF. you can click on Anniek's blog on the sidebar to read her story. and in addition to Anniek, there are two people at my church with tetralogy: a father and son. yes, the father has it, too. i've met him. he's an adult, and if you met him, you'd never know he has a wonky heart. simply amazing. and when you consider that these people would not be here today without this first surgery so very long ago... awesome. just awesome.)

how AMAZING!!!!

2010-11-28T14:18:00.000-05:00

can you believe that

on thursday...

4 days from today...

ASHER TURNS 4!!!!!!!

honestly, i can't believe it! just thinking about it makes me cry. even the most faithful followers of this blog cannot fathom how miraculous this is, that

Asher is alive.

and

Asher is stable.

i'll admit, i never allowed myself to imagine him living this long. in fact, it's only been in the last month or so that i've been saying "he's almost 4." and yet... here we are... he is officially

ALMOST 4!!!!!!!

in case you were wondering...

2010-11-25T12:37:00.000-05:00

recently, a friend of mine asked a question on her facebook: what are the "extra" expenses that you incur when caring for a medically fragile child, especially the expenses that you never expected or never thought about until you had this child?

great question, and WOW! did she get a lot of responses.

i know that i, for one, always believed that our health care system in ontario was fabulous... at least in that it covers so much. then asher was diagnosed. sure, i have never had to pay a dime for his care in the hospital, which is good (for example, the prostaglandins that kept him alive before and in the initial period post-hybrid, yeah. that one med costs $1500 per dose. at two doses per day. for 11 days. not to mention, the cost of the bed in CCCU - just the bed space, not the meds, surgery, nurse, therapists, docs, equipment, but just the bed space - is $2500 per day. and just in that first admission, asher spent 18 days in CCCU. and there were a lot of other meds, several doctors, heart surgery, tests, an MRI, oxygen, bloodwork, etc etc etc etc etc... yeah, thank the good Lord for Tommy Douglas, because there is no way we could have afforded to keep asher alive for just one day in there). most of asher's meds were covered, either partially (80%) or entirely, that sort of thing. i've never had to pay a doctor or a surgeon (thank God!). i didn't need to pay for his first feeding pump, although i would have had to pay for the replacement pump were it not for a generous gift from some charity (i still don't know which one).

but it's those other expenses... the ones you never think about... those are the ones that destroy you financially. things like transportation, parking and gas for appointments. food for the parent who stays with the child during admissions. food for the rest of the family when i'm away or just plain exhausted at the end of a looooooooong day (because that has usually ended up being "convenience" foods or take-out). it's things like special tape and tubes and syringes and formula. its the "special diet" asher required to gain weight, things like ice cream and whipped cream and tons of cheese and butter and mcdonalds. the "stuff" you buy for your other children in an attempt to compensate for your absence or consuming focus on the other child. it's the phone bills, as you try to contact (and/or co-ordinate) doctors and therapists, the cell phone that you must have at all times in case of emergency, and long distance calls when you're in the hospital or clinic far away from home. it's the internet access, so you can educate yourself on your child's condition, and so you can stay in contact with family and friends while in the hospital (and that's expensive). it's utility bills incurred because of your child's condition: asher needs the house warm in the winter (21-23C is ideal for him), and very cool in the summer (our a/c is set at 18-20C in the summer); when asher was refluxing all the time, it added up to a lot of laundry; hydro to run the feeding pump 20 hours a day, etc.

and with the boys' birthdays coming up, i just don't have the money for the party they really want (at a bowling alley), so we're going to do something fun here. and it's gonna be uber cheap. and i want to give asher something awesome because, well, he has survived four years! but um, yeah. not gonna happen. and i want to give bram something awesome because, well, he's awesome for putting up with this life. but um, yeah. not gonna happen. i'll figure out something good, i'm sure, i always do, but in the meantime, there's the guilt and panic. which leads us to...

the non-financial issues: the stresses on relationships and friendships. the guilt of "ditching" the other kids when asher gets sick. the stress of money-less-ness. the chaos and unpredictability. the feelings of freaxia and of being overwhelmed... i could go on,

getting the idea?

and asher is one of the cheapest and least complicated medically-fragile children i know of.

seriously.

i want you to check out my friend's post. she wrote about this subject the other day (and did it better than i just did, i might add).

it will give you a clear picture of why SN/MF families struggle.

and so, since it's thanksgiving today in the states (asher has a lot of followers south of the border), and with the holiday season fast approaching, i'm asking you, gentle readers, to do something.

i know that a lot of people look for registered charities to give to at this time of year. if that's the case, i would ask that you donate to cardiovascular research at SickKids. if you decide to go that route, that is.

but i want to suggest something a little different, too. something you may not have considered. and of course, since i'm writing, it will involve a little story.

christmas for the kids and i is taken care of this year. i mean, i don't have to worry about anything. someone (whom i will not name, but rest assured this person is amazing) emailed me the other week to say that their family (including their parents) are giving us christmas this year. i don't have to buy a single gift for the kids. we will also be given groceries and gift cards, because they know that i'm low on funds (shocking, i know), so i won't need to worry about anything like that. honestly, just the thought of this gift is enough to make me cry. i'm tearing up right now, actually. this is such a wonderful gift for the kids and me, and even i cannot express how grateful i am for their generosity.

so here's where you come in:

we all know families with chronically ill and/or medically fragile and/or technology-dependent children. why not help out one of those families? you don't need to play Santa like my friend is doing. but you might think about buying a gift for each of their children (please remember the siblings). and/or something for the parents. or you might want to give something simple like grocery store gift cards. or get the oil changed in their vehicle. or rake their leaves/shovel the snow. offer to watch their other children while they go to an appointment. take a couple meals to the parent in the hospital with their child. whatever. just please, do something. you can't imagine how stressful this time of year can be for families in this situation (well, maybe you can after reading these posts... at least, i hope you can). please help someone this holiday season. even something small can make a huge difference in their lives.

Whatever you do for the least of these, you do for Me. ~ Jesus

dude, you are such a dude!!!

2010-11-21T14:25:00.000-05:00

so, this morning, i picked up asher from his sunday school class, and he and i meandered down the hall to get blithe and bram from their class. as we're walking, he saw an older kid he knows. (rowan is 13 and helps out in asher's class sometimes. asher loves him. so cute!) anyway...

rowan is walking down the hall with a bunch of his friends. asher sees him, does the little nod-thing, and says, "hey rowan." rowan looks over, does the nod-thing, and says, "hey asher."

and they both just kept walking.

because they're just. that. cool.

look what my baby can do!!!!!!!

2010-11-17T19:42:00.001-05:00

that's right, asher fans.

HE CAN WRITE HIS OWN NAME!!!!!!!!!

and he's not even 4.

yup. he rocks.

and those faces... those perfectly (for a kid) drawn faces... you guessed it, asher drew those, too. he's awesome.

the times, they are a-changing

2010-11-12T21:10:00.000-05:00

well, asher is stable now. it has been over 5 months since his last admission, and even last month when he had that little "hiccup" he came out of it quickly and on one less med (leaving only aspirin!). so, yeah, he's stable now. kinda weird, no?

not that i'm complaining.

anyway, since asher is doing better now, i knew that it was time for some things to change around here. namely,

i can get a job.

so last week, i began sending out my resume. and on wednesday this week, i went out around town, handing out resumes and applying for jobs. i wasn't picky. so out i went.

the first place i went to, i asked if they were hiring, and lo and behold, they were! in fact, the woman asked me right then and there if i could come in for an interview the next morning.

that's right, folks, the first place i went to invited me back for an interview.

so i went for the interview the next morning. my first interview in about 9 years. and guess what!

i got the job!!!

so i went for my first day today. i'll admit, it was a bit weird. and i'm exhausted. but it was good. and i enjoyed it. yes, at the end of my shift i was very ready to go home. i haven't had an actual job since my contract with the Canada Games ended in august 2001, so this whole working thing will take some getting used to. but i'll manage with all that.

as for the kids... yeah, it's going to be an adjustment. for all of us. the hours at my new job aren't great, so there will be a lot of child care involved, but we'll get used to it, we'll adjust, and we'll get through. and we'll be ok. blithe prayed last night,

God, please bless mommy in her new job. please be with her and help her, and don't let them make her work too hard, because i don't want her to work too hard. please be with her on this journey. and please be with me and bram and asher on this journey, too.

yes, those are her words. we're all excited about this new turn in our journey, even though it's scary. but blithe knows... God is going through this with us, and we're not dealing with it on our own. so we'll be ok. i told the kids last night, "we'll get through. we'll adjust, and we'll do what we have to do." and bram agreed just as loudly, shrill-ly and enthusiastically as you would expect. asher just kept playing with chicky and elmo-y (who is not, in fact, the Elmo, but rather a yellow bunny). blithe said from her room, "yup! because that's what the heywood family does, right, mommy?"

anyway, i thought i would update you on the goings-on over here, even though they have nothing to do with asher's health. but it's all part of our journey as a family. if you wouldn't mind, please pray for us in this new part of our journey. it's unfamiliar territory we're treading here, so any prayers, good vibes, crossed crossables would be much appreciated.

and since you're praying/vibing/crossing...

don't forget to keep praying for shawna and her family. they need it.

also, little ella in australia, who had a stroke the other night. she is still in the hospital. and not only is it a hard time for her, it is really hard on her mom, shannon. she is heartbroken. please continue to pray for ella, shannon, and dad neil.

prayer requests

2010-11-10T01:43:00.000-05:00

i'm rallying the troops tonight for a couple friends who need prayer.

Shawna
i've mentioned shawna before. and once again (or rather, still) she needs prayer. the complications in her pregnancy are getting more complicated. it's very scary. i won't go into detail, but it's terrifying. please pray for her, the baby, her husband, their seven children, and her mother. she has a couple appointments in toronto on thursday. please pray.

Ella
sweet little ella is a heart baby in australia. her mother, shannon, is on my facebook. ella had a stroke tonight/tomorrow morning (time differences). please pray for ella, shannon and her husband neil, the docs... ella had heart surgery on 26 october, everything went well, and she was home three days later. but now... yeah. please, please please pray for her.

i'll try to keep you posted. meanwhile, please continue to pray. thank-you.

and then, of course, God weighs in...

2010-11-08T12:48:00.002-05:00

so, i'm sitting here, crying over the last post...

and there comes that still, small Voice.

when i shared at church in september, i talked about how God has been my Refuge throughout the "asher journey." and while i have been crying this morning about blithe and bram, i was reminded that

i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

and as i was thinking about that, another thing came back to me:

... and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

so now i ask myself...

because this feels like one of those times "when it's dark and scary and it feels like God has forgotten us"...

if i look back, will i see that God was there?

so i'm looking back,

and yes. i can see that God was there.

He is there in blithe's compassion. He is there in bram and asher's friendship. He is there in their play. and yes, He's there in their arguments, because those are normal and therefore a gift. He is there during our storytimes and mealtimes. He is there when they hug me and tell me they love me. He is there when they hug each other and tell each other "i love you." He is there in the paid bills. He is in the pantry right now, in the form of beans and rice which we will have for supper. He was in blithe's room last night, while she and asher cuddled together all night. He is there in school with each of them right now, allowing them to learn and hang out with friends and enjoy their day. He is here with me right now, holding me and reminding me that, as i said in september,

i can look back - and i do look back - and i can see that, ok, God was there and there and there and there. ok. God was there, so He'll be here.

and then i continued,

and then i can, not look forward because i don't know, but i can look around at what's going on right now.

so, yeah, He didn't give me a crystal ball, and i still don't know what the future holds for my children (all of them), but i don't have to. God has a plan, God knows what He's doing. i don't have control, and i don't see the bigger picture, but that's ok, because God does. and as long as i trust Him, we'll be ok. we'll get through. maybe a little worse for wear, but on the other hand,

much more beautiful

because it's His Love and Beauty that shines in my kids right now. sure, it's a tough life we have in a lot of ways. but He never promised that life would be easy. but He always promises that He is with us throughout our lives. so yeah, i don't know what the future holds. but i know God is holding us now, and that's all i need to know. (although a little "heads up" would still be nice, i'm not gonna lie. {wink})

crystal balls, looking back, and the unanswerable questions that break my heart

2010-11-08T11:56:00.002-05:00

a friend of mine has a blog about parenting a medically fragile child. her daughter's condition is different than asher's, but our journeys as mothers have often been very similar. and so her post today broke my heart. i'm not going to summarize it here; you can check it out for yourself, if you're interested. but i want to share my reactions to it. and please know, i don't always think about these "unanswerable questions"... in fact, i very rarely do. i know that i don't know the future and i'm ok with that. except today, it would seem. but it's part of the journey, so i'm sharing it.

when a family has a special needs or medically fragile child, suddenly, the entire family dynamic changes. in every imaginable way. we went from "ed, heather and the kids" to "asher and heather... and aren't there some siblings in there, too?" since 10 december, 2006, my life became centered around asher. asher became my identity. even my email addy is "wonkyheartmom" for crying out loud! his wonky heart became my wonky heart.

as for blithe and bram... sigh... (please bear with me in this post. my heart is breaking and i'm in tears, so if there's typos, it's because i can't see them.) it's like there are two sets of children in my life now. there's asher, and there's "the kids." and "the kids" are blithe and bram. yes. they're separate. when asher is in the hospital, or he's in emerg, or he's sick at home, i need help with "the kids." and that never means asher. that means blithe and bram. i mean, think about it: people ask me all the time how asher is doing. occasionally, they'll ask how i'm doing. rare is the person who asks about blithe and bram. and by "rare," i mean, i don't remember the last time someone asked about them. here's just two examples: a book is being written about life with a single ventricle kid, and ours is one of the families being "showcased" (for lack of a better term). the authors wanted to know about asher and his parents. the kids? mostly overlooked (because we did discuss them, but not in depth). and when i was asked to share at church about our journey, they asked about asher and me. again, there was no mention of blithe and bram, other than that i have three kids. i'm not blaming anyone here; it's natural to focus on asher, because his part in this is so obvious and dramatic. but still... i have two other kids whose stories don't get told.

and how have blithe and bram responded to all of this? generally speaking, they deal with all of this wonderfully. a SN/MF mother's dream. they are strong, joyful, resilient, compassionate. they just roll with it. "asher's in the hospital again? hooray! that means we get to spend time with nana!!" but then i wonder... you know... in the bigger picture...

blithe knows way too much about asher's condition. and i don't just mean that she knows about all the defects in his heart and she can tell you about the surgeries and she can find the aorta on a picture of a healthy heart (b/c there isn't one on the picture of asher's heart, and she knows that, too). i mean... she knows. she knows he's fragile. she knows that there is no medical explanation for why he's still here. she knows that he could pass very quickly, with very little warning. as for bram... he was so young when asher was born, to a large extent, this is the only kind of life he has ever known. the instability and unpredictability and stress and chaos and unknowing. up until the other week, he assumed that when he was asher's age, he had all kinds of scars on his torso, too.

and then there's the non-asher factors that go with this life, which are inextricably intertwined with the journey. asher's care is expensive. so um... yeah. i'm usually broke. and the kids know that. we don't get to buy new clothes very often, and when we do, they're not super cool. they're super cheap. we don't get to eat out very often. a full tank of gas is a luxury. the kids are aware of this. they don't get the cool toys that they see advertised on TV. nope, they have to make due with the same broken toys they've had for years, unless their dad buys them something (which is also nothing expensive). i mean, seriously, right now, asher needs a new pair of everyday shoes. and can i buy him a pair? nope. he's just gonna have to make do with these shoes that don't stay on his feet, because i just don't have the money for a new pair. as for groceries... the kids don't get lunchables or special treats, they don't get their favourite cookies. they get homemade cookies. and sandwiches on homemade bread (other than today, because my mother bought a loaf of bread for us on saturday)... i'm not trying to say we're starving or anything; they're fed, don't worry. but my point is this: the kids have to sacrifice a lot.

and it's not just sacrificing material things, either. as joyful and gracious as blithe and bram both are, there are those tell-tale markers of this life: they both struggle a bit with anxiety. granted, some of that is genetic. but it doesn't help that they have very little control or predictability in their lives. i'm working on getting some sort of routine now, but it's hard. we've been without it for so long, i feel like i have no idea how to do that anymore. but even developing a routine now is a huge change for them, and that causes them stress.

the point i'm trying to make is this: having asher in our lives has been very difficult. yes, it's wonderful, he's an amazing boy, and i love him more than i ever imagined i could ever love another person, and he is a gift and a blessing in innumerable ways. don't misunderstand me. but... sometimes...

and i'm just being honest here...

i ask myself, "if i could go back, knowing what i know now, what would i have done?" if i knew the cost to us as a family, if i knew how he would suffer, if i knew how blithe and bram would suffer...

would i change anything?

and again, i'm being honest here.

knowing what i know now, both about the condition/treatments/odds/etc and about the life itself,

i would still have made the same decision.

but i would not have brushed off some of the options quite so quickly. i would have at least entertained the thought for a few minutes, instead of snapping at the cardio. i would still have chosen the hybrid. i honestly would not change a single thing that i have done over the last nearly 4 years. but i would have given more thought to the impact of my decision on the other kids. again, i'm not saying that i would have chosen comfort care. i wouldn't have. it's not mine to decide how long another person lives, so i wouldn't have chosen that. i would still have chosen the hybrid, too, even though a couple complications along the way were directly because of that surgery.

and then there's the other unanswerable questions...

how will this life impact blithe and bram as they grow up? what kind of adults will they become? what kind of parents will they be? or will they even have children at all, too afraid to risk having a child like their brother? will they hate me and resent the life i chose for us? will they hate God for giving us this life? or will they grow up to love God? will they find comfort and refuge in Him and His promises? will they be compassionate toward other people? will they have learned to embrace today instead of fearing tomorrow or regretting yesterday? will they see God and Beauty and Light where others see darkness? or will they be consumed by fear and anxiety and mental illness?

if i'd had a crystal ball back in the day, even before asher came onto the scene, i think i would have made pretty much all the same decisions i've made anyway. and in the meantime, "all" i can do is to do my best, love them unconditionally and completely, and trust that God has plans for them, plans to prosper them and not to harm them, plans to give them hope and a future. it's just...

sometimes it would be nice to know ahead of time...

happy hallowe'en!!!

2010-11-01T23:49:00.003-04:00

yes, yes, i know. it's already november and i still haven't posted about hallowe'en. bad asher's mom, bad bad asher's mom. and so here we go: the long-awaited post.

asher got his costume a couple weeks ago, and so he wore it. a lot. everywhere. all the time. yup, he LURVS his costume.

alright, fine, twist my arm. here's a pic:

that's right, folks. he was ELMO!!!!!!

(funny story: so, you may or may not remember how i got through his diagnosis and first admission. when i learned that he would be blue, i thought, "well, that makes hallowe'en easy. he'll be grover." so, now that he's pink, he doesn't need to be anyone blue. nope. asher almost blends in with the costume now!!! WOOHOO!!!!)

so, i'll tell you about hallowe'en now. i got all the kids dressed. you've already seen asher.

bram was Sheerluck Holmes, from VeggieTales. Sheerluck is their version of Sherlock, and is played by Larry the Cucumber. hence the green face and buck tooth. how cute is he, eh??

blithe was Mina Harker, from Dracula. look at her working that costume. i'm actually quite proud of this one.

here's the close-up of the make-up. now, i don't usually allow the kids to be anything evil or scary, and blithe wasn't supposed to be. this started as a medieval princess, which blithe understood to be an evil princess, and well, it went from there. and then i was having so much fun doing her make-up, and i guess i got a little carried away. but she looks fang-tastic, wouldn't you say?

anyway, the kids got all costumed, and out we went.

with bram's bestest buddy nicholas. nicholas' mom lori took us all around her usual "haunts." we left their place at 6:00, and didn't get back till almost 8. and you know what?

asher walked.

the whole way.

the whole time.

sure, he was a little slower than the other boys, but that's because they are two years older and have longer legs.

not because asher was tired.

yes, you read that right.

asher walked.

and ran.

and jumped.

and carried a pail full of candy etc.

the

whole

long

way.

for two hours.

and he wasn't even winded.

just a normal kid doing normal kid stuff at a normal 3 year old pace.

extraordinary, no?

i love it.

(and you're gonna laugh... i told him he's allergic to chocolate. and i got blithe and bram in on it. so he handed me every chocolate bar he got. mwahaha)

(and yes, i have some ideas about future costumes. next year: a robot. {wink})

WHA-?!?!

2010-10-21T21:36:00.001-04:00

today we went for our regularly-scheduled cardio appointment in london. and all in all, it was... um... interesting. but in a good way, don't worry. {wink}

first, we went in for the pacemaker check. no problems there. awesome.

then, the ECG. which asher did himself. he got the leads, attached the stickies, and put them all on his chest, legs and arms. sure, the tech told him where to put them, but he put them on. you know you spend a lot of time in hospitals when... haha

then the fellow came in. he's working toward becoming an adult cardiologist, but to become an adult cardio, you have to do a two-month rotation in paeds because, in the words of a fellow from a couple years ago, "some of these kids grow up, and we need to be prepared for when they do." frankly, i prefer buffo's explanation: "if neither of us [paeds cardios] is available, the adult docs can come and check him out, and they'll have some idea of what they're dealing with." a much more palatable explanation, if you ask me (and yes, i'm choosing to ignore the idea of all paeds cardios being unavailable). anyway, dr chew asked a bunch of questions and listened to some of my answers, and listened to asher. and before you ask, yes, he heard the murmur, but said that it wasn't very loud, so it's not too concerning. um, ok... anyhoo...

then he went and got dr w, our cardiologist. she came in and checked asher out, and said that he looks pretty good, and since HCT is for failure, she's comfortable with dr russell's decision to stop it. i told her that dr russell had said that, if he got too puffy without it, he might be one of those kids who needs it every other day, and that since asher, having missed two doses, is now getting pretty puffy, i'm going to do the every-other-day thing. so she looked at him and said, "yes, his eyes are looking a little puffy." and she didn't argue with my dosing decision, so i'm going ahead with it.

and let's see, what else?... hmm... i was sure there was something else to report about the appointment... what was it again?... oh, yes, i remember!

ASHER DOESN'T NEED TO GO BACK FOR SIX MONTHS!!!!!!!!

this, my friends, doesn't happen in asherland... at least not in cardio province. and yet... here we are!!!!! is anyone else doing a happy dance right now, or is it just me??

so we got back in april for an ECG, echo, pacemaker check, and holter. ugh, the holter. the bane of pacer-life. i hate holters. pain in the arse, they are. but, ah well. so it goes. i do what i have to do, and hey, it's not for six more months, so really, WHO CARES?!?!?!

after the appointment, i had to rush to make it to an appointment for myself. i've been having some health issues of my own lately (nothing too major, but needs to be dealt with... blerg). so we flew back to st thomas, i dropped asher off at his dad's, and raced to my appointment. i got there a few minutes late, and then waited for the doc to arrive. once she did, she was very nice, and well, i'm heading back to her office on tuesday for an ultrasound, bloodwork results, and hopefully, a plan.

so when you're praying next time (and whenever you think about it thereafter), please thank God that asher has improved so much in just a few days. sure, the murmur is still there, but cardio isn't concerned about it, so that's wonderful! and then, when you're done with that, please pray for me. i'll admit, i'm a little freaked out right now, so please pray that i'll have peace and that doc will have some answers for me. also, please continue for my friend shawna, who is having some pretty major health issues in and of themselves, but now she has also been diagnosed with some complications with her pregnancy. please, please pray for her and the baby. it's a scary situation, so please pray for her, the docs, her husband and their children, including the one on the way. thank-you.

the update you've all been waiting for

2010-10-19T16:26:00.002-04:00

ok, so we went to cardio in toronto today. here's the low-down:

the echo showed nothing wrong, other than some minor backflow through the arch (some blood flowing the wrong way through his aortic arch, so... back toward the heart instead of out to the body). but it's only minor so she's not concerned. basically, the symptoms do not appear to be caused by his heart.
asher now weighs in at a whopping 14.6 kg (32 lbs). this is roughly a 16% gain over his weight in may. to give you some perspective, this would be proportionally the same as if i had gained approximately 30lbs in the same period (which, thankfully, i didn't). when i mentioned the weight gain to dr russell, she was very concerned. she recognizes that he needed to gain it, and he is now nicely proportioned between height and weight, but she said that we can now back off on the uber high fat diet, and just go with "a little higher fat than normal." because this kind of weight gain over a longer period of time will not be good for his heart.
asher's bloodwork showed that his liver is doing well, and his protein is good, so that's a good thing. but... the results showed that he's on the dry side (which he often is). so she stopped the HCT (the diurretic) for now, adding that if he begins to get really puffy, that he probably only needs it every other day instead of daily. we will discuss that with london cardio on thursday. i already know that nephro (who put him on it originally) is comfortable with stopping it, but he left it up to cardio. so it looks like everyone is on board with that.
i told her about asher's newest diagnosis (epilepsy) and all the seizures he has (average of 2-3 absence seizures a day). she was very concerned about this. she asked a lot of questions about why we had consulted neuro, so i told her about the seizures with fever. she told me that, if neuro wants to medicate asher for the seizures, that they should feel free to do that.
since any and all cardiac issues have been ruled out, she said that asher's paediatrician should now "feel free" to investigate "general paediatric issues." so, basically, we have ruled out the heart, but other than that, she doesn't know. but it's not heart.

basically, we covered a lot of ground in just a few minutes. and given that asher and i hit the road just after 4am, it was a very long day today. i am exhausted now. asher got to nap all the way home (no, i'm not bitter or anything). but thank-you to my wonderful friend (and asher's new girlfriend) diane for having lunch with us. definitely a good end to the appointment.

some musings here... nothing urgent about asher. just me and my faith journey. so don't feel you need to read if you don't want to. LOL

2010-10-18T15:12:00.000-04:00

a quick heads-up before you read: please don't misunderstand me, here. i'm not out to criticize anyone's faith, i'm not trying to say that i'm right and "they" are wrong ("they," for lack of a better term). right now i'm thinking about my own faith, and merely using other people's as a foil for my own. nothing more. also, i think i ramble a bit... ok, a lot. sorry. again, don't feel that you need to read this post if you don't want to. i'm just thrashing my way through some faith-type questions. ok, you may proceed to the rest of the post now, if you so choose.

i've been reading a few other blogs lately, and i find myself wondering today...

about my faith in God...

not "do i have faith," because i do... but maybe more like... i don't know...

here's the thing:

i'm sure there are people out there, probably who read this blog, who pray that God will heal asher, that he'll have a whole heart and he'll be fine and grow up strong and healthy.

but i'm not one of those people. i asked God for that "big H" healing, and He said "no, that's not the miracle I'm going to do here." so i don't ask God to heal asher.

i've also accepted the 70% chance that asher will grow up. i live in the 70%, but i still hold that 30.

i don't see asher's complications and bouts of failure and infections and weird what-nots as being the work of satan, as some people see illness. i see them as the natural results of HLHS and a compromised immune system and mildly wonky kidneys and epilepsy. i see them as semi-expected (albeit loathesome) bumps along asher's path. and i see them as opportunities to look for God (and find Him)... which i do.

i don't know... is there something wrong with me, that i simply accept that this is the way it is? that i don't see evil forces at work when asher gets sick? and i'm being honest here. sometimes i look at others' faith and go, "why don't i believe like that?" and even, if i'm honest, "should i believe that way?"

but every time i start to think that way, i hear a still, small voice that says, "your faith is just fine. keep this faith."

maybe i'm tired right now, and that's why i'm wondering. i mean, just this morning when i posted, i asked specifically that you not pray for a miracle, but rather that asher would continue to show these symptoms tomorrow and they would find something.

again, please don't get me wrong. i want asher to be healthy. i want this to pass. i want this to never, ever happen again. i want him to grow up and be strong and not have to worry about high-fat diets, and high-iron diets (sometimes his haemoglobin is a little low), and high-protein/carb diets (he might be hypoglycemic, on top of everything else), and low-sodium diets. i want his heart - this heart, the heart he was born with - to carry him through a long life. i want this heart to stop failing. i want him to get married and have children and grandchildren and great-grandchildren. i want him to stay out of hospitals - even out of emerg - for ever, going back only for yearly check-ups. i want him to hate echoes and ECGs and BP cuffs and sat probes and stethoscopes. i want him to say, "who's dokker caldarone?" instead of "i not want to see dr russell. she boring. i want to see dokker caldarone." (believe it or not, that's a direct quote from this morning.) i want him to react and to tell me when he's dizzy, short of breath, refluxing, because i want those things to be rare anomalies in his life instead of the norm.

but i know that this isn't likely going to be the way it is. his heart will continue to give him problems. he will always have to be careful. he can't live a fully normal life. sure, he'll come close, because that's the type of person he is. but he won't be able to race motorcycles (he told me the other week that he wants to do that when he grows up). and he can't go on roller coasters, and his endurance won't be like other kids (no soccer or cross-country for him). there are days i wish i didn't know what it was like to get bad news from a doc. i wish i didn't have the number for SickKids memorized (sadly, i do, and it's in my phone just in case i get too flustered to recall it). i wish he didn't know that emerg = popsicles and stickers. i wish i didn't know what each cardio's specialty is, and that i didn't have favourite emerg docs.

and yet... this is our reality.

and i accept it. i roll with it all.

and i still maintain that it is God who set this journey for us, who "allows" these things to happen. this is how i see CHF, etc. it's like the weather. God set up these systems to function a certain way, and so they do. sure, there's crappy weather systems like hurricanes and floods and ice storms and droughts and so forth. but they're called "natural disasters" for a reason. it means that these are simply the natural way that weather works sometimes, even though they're harsh. well, it's the same with CHF, for example. asher was given a heart that is not designed to sustain life. and even with all the surgeries, it is still pretty much par for the course. when you have half a heart, you will run into trouble from time to time.

but i see God in these things. God can be and is right there, even in the middle of "natural disasters." i don't believe that God is some distant "intelligent creator" who made these things and then sits back and watches how it all plays out. i believe that God is real, present, and personal. i believe that He is active in asher's journey. i mean, really, how can i not believe that, when i know that asher should have died so many times already?? i see God everywhere along this journey, so i simply cannot brush Him off and say, "look at the crap He left us with."

but... since i believe that God is active in asher's life... i don't know... what does it say about my own faith when i don't ask God for huge miracles anymore? what does it say about me that i don't give satan credit when asher gets sick? i mean, other people seem to see the devil at work in HLHS, so... shouldn't i?

and yet, here's the thing: i am actually cool with my faith. i enjoy it; i have peace and assurance of God's presence with me when we walk through the valley of the shadow of death. and sure, it may not work for everyone, but it works for me. i know that no two people's faith are going to look the same. my faith in God has carried me through some pretty dark times, and not just with asher, either. i don't know...

maybe i should just stop reading other blogs. (right. because that's gonna happen.) or maybe i should just accept my weird faith for what it is... a lifeline, a comfort... maybe a little off of the mainstream, but it gets me through the day.

i have accepted asher's condition. and i trust God completely with my littlest man's life and "health." when God said "no" to the healing, i had one request: "You made him this way, so You sustain him this way." and so far, he has. i can (and do) give credit to the docs and surgeons and nurses and dietitians and so forth and to asher himself for getting us through CHF and sepsis and feeding issues and illnesses and surgeries... but i also know that, if it isn't God's will for asher to get through all those things, he won't.

please don't think i'm ok with the idea that my son won't grow up. i'm not. it breaks my heart every time i think about it. (so i don't think about it very often, and it's one reason why i just focus on the day we have instead of some horrible, heartbreaking, unknown future.) i want my baby to grow up, and i will fight like hell and do everything i can to make sure he does. yes, i'm aware of that 30%... but i live in the 70. that's the number i cling to. that's the number i remind myself of. when everything seems to be going wrong and my baby is dying and i'm scared out of my mind that i'll lose him, that 70% helps me to breathe one more time... and once more after that... and once more after that.

i almost wrote there, "God is in that 70%." but then i realized... that's true... but...

God is in that 30%, too.

which i guess leaves... if my math is correct (and math was never my forte)... and i think i'm right here...

0% room for satan, if God is in the whole 100%, right? is that weird? does that make sense to anyone else? am i just burying my head in the sand about the devil here? i mean, so many other people see him at work in things like failure and sepsis and CHD in general. is it strange that i don't?

i cling to two verses for this journey, and they kind of answer what i'm trying to thrash my way through here today. so i'll leave you with these verses, to ponder and enjoy as much as i do:

I praise You because i am fearfully and wonderfully made;

Your works are wonderful, i know that full well.

Psalm 139: 14

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

the plan for tomorrow

2010-10-18T12:33:00.001-04:00

the cardiology clinic at SickKids called this morning, and i now have the times for our appointment.

we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.

all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)

i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.

he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.

and some other prayer requests:

please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.

a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.

i think that's about it for now.

can you believe, we actually got to see a couple DOCTORS this weekend!!

2010-10-17T15:45:00.000-04:00

so, yesterday, asher wasn't doing so well again. after some humming and hawing (did i spell that right?) yesterday, i took him in to emerg in london.

they took us into Ambulatory Care (a rarity in asherland... lately we've been in J-bed. sometimes i think they should just put up a sign that says "asher's bed"... oh, wait, that would imply we're there all the time. so... scratch that). after going through asher's whole medical history with the med student (so it's a miracle we're home already, haha), dr helleman came over. i have to say, i really like her. first off, she loves asher. second, she's awesome. when asher comes in, she listens to my concerns, and she is very careful to investigate fully. and she's not afraid to consult cardio, if need be. (translation: she calls them every time she sees asher.)

during her assessment, she heard the murmur. it concerned her a bit, since she remembers distinctly not hearing it when she saw us in august. so she ordered a chest x-ray and ECG, both of which were "unremarkable." then she called the on-call cardiologist, who was, you may recall, dr rauch.

uh-oh, i thought. this could be weird. i hope he's cool.

turns out, he was. he told her that he wanted to see asher and do an echo today, so we were to meet him outside the clinic at noon.

cut to today. asher slept in and wasn't in the best of moods, but he was tolerable. so off we went to church. he was looking ok, and i wasn't too concerned about him, so i put him in his class, but told them what was going on and to call me if he did anything "asher-ish."

i didn't get called. phew!

after church, however, he was pretty tired. usually he's running all over the church after sunday school, because he has a great time and is so energized by the crafts and singing and playing with the other kids. today, however, he walked, following at a distance, and complaining because we were going too fast.

off we went to the hospital. (good to know: it only takes about 7 minutes to get from the church to the hospital. believe me, i was watching the clock.) we parked across the street, where parking is free. {wink} but that meant that we had to walk across the street. sigh. i should have known, asher cried and wanted to be carried the whole way. i compromised with him, and carried him in the intersections. (he's now up to 15.2 kg - 33 lbs... ish... i'm metric only with this kid, so i'm guessing at the conversion there - and i was in high heels, so there was no way i could carry him the whole way.) but wow! was he cranky!!! and puffy, actually. those eyes just aren't right. that has nothing to do with the fatigue and irritability, but it's worth noting, so there you go.

but we got into the hospital, and the kids automatically got themselves some hand sanitizer, and asher flipped out on me because he wanted to get his own without help. of course, he had trouble with that, and he got more frustrated, and then it was foamy, which he didn't like, so that was another tantrum.

we got to the clinic a couple minutes early, so the kids sat and chatted (asher complained but stopped crying, though he did snap at bram a couple times), and i pondered the interaction of hypoglycemia, heart function and seizures. sadly, i'm not even joking. i know, i'm a nerd. haha

dr rauch arrived and chatted with the kids for a couple minutes, introduced himself to all of them, and let us into the clinic. he took asher into the echo lab. asher co-operated and laid down on the bed. he wasn't thrilled, but he was calm. he wanted to help with the echo, and dr rauch joked that maybe when asher's a bit older, he can do his own echo and doc will have coffee with me. haha but the echo went well, asher was very patient, and doc explained to me everything that he was looking at. honestly, i don't remember the last time anyone ever did that, probably not since the first few post-hybrid echoes with pepy and buffo. so things look a lot different in there now.

at one point, i made some comment like, "i told dr welisch we wouldn't make it till our next appointment." and he said, "when are you here next?" "thursday," i told him. "but you're going to sick kids on tuesday, right?" "um... yes." now, here's what's interesting about that. our paeds didn't tell him that. i didn't tell him that. and i don't remember telling dr helleman about that last night. so... um... how does he know that?? my theory is that dr russell called and told him, since SickKids is much better at keeping london in the loop than london is at keeping SickKids in the loop. not that it really matters, i'm just saying...

anyway, when he was done, he told me what he thought. he couldn't see anything on the echo that could be causing all the symptoms. asher's liver seemed fine, and his urine last night showed nothing out of the ordinary (urea and creatinine were fine, no infection, and he's not leaking protein there). he also told me that sometimes fontans can leak protein through their gut. "ah, PLE," i said, "trust me, i'd be telling a cardiologist if asher had diarrhea." and since asher is pooping just fine (c'mon, you know you were wondering. haha), PLE is not a problem, either. "basically," quothe the doc, "i don't know. but we've eliminated some big things, so that's good."

so, a lot of time in the hospital to hear, "i don't know." sigh.

i'm now feeling much more relaxed going into our appointment in toronto on tuesday. even if dr russell doesn't find anything on the echo, i am confident that she will continue to investigate. she knows us both well enough by now to know that, when i say there's a problem... it means there's a problem.

the thing is... this is all so familiar. this has happened before, and london saw nothing on the echo, and dr russell saw nothing on the echo... but she believed me and admitted asher, and ended up doing a cath. and they found problems with function and pressures. nice.

but like i said, i'm feeling better about all this now. last night, i'll admit, i was pretty upset about all of this. i was scared and crying... yeah, it wasn't pretty. but i prayed some, and this afternoon, i'm feeling better. asher's not, mind you, but i am. so, at least i can help him through the next little while, and advocate effectively for him.

so there's the update for today. i'm hoping there won't be anything else to report until tuesday. talk to you later!

days like this... i wish there was no such thing as CHD

2010-10-04T16:12:00.000-04:00

when i turned on my computer this afternoon, i saw the news on facebook.

little ewan, who was only two weeks old and was born with tetralogy of fallot, passed away last night.

if you want to check out his story, you can visit his blog. as for me, there's nothing i can say, other than...

CHD sucks.

please hug your children a little tighter tonight. asher's getting all the hugs he'll let me give him.

what a difference a pacemaker makes

2010-10-04T13:17:00.001-04:00

saturday marked six months since asher was admitted to london's PCCU with severe bradycardia. when active (read: awake and playing a bit, since he wasn't nearly as energetic as usual), his heart rate was in the low 50s. last night was the half-anniversary of the scariest night in asher's life. his heart rate was sitting at 30, he was hands down the darkest shade of grey i'd ever seen him (only slightly lighter than charcoal - and i'm not exaggerating here at all), he was sweating like a pig so that he soaked through his bedding in just a couple minutes, and his nurse couldn't wake him up. there was a vial of atropine at his bedside and the intensivist was scared out of her mind and actually said, "this kid needs a pacemaker right now. get him out of my unit; i don't want him here." i was terrified that asher wouldn't wake up in the morning.

and it didn't improve much over the next week or so. he didn't get his little battery-pack for over a week, and that whole time, i was disintegrating emotionally. i must have cried every day. now, granted, i made some great friends, and the lunches with D were a very welcome (if surreal) distraction, but every time i looked at asher my heart broke. every. single. time.

and if i'm honest here, i have tears in my eyes as i write this post. it was probably the darkest time in asher's life. sure, the first admission, when he was diagnosed and had his hybrid... that was terrifying, too. but don't discount the beauty of shock and ignorance. when you have no idea what's going on, you don't know just how scared to be. but by now, i have some knowledge on my side. i know what it looks like when a heart is failing and shutting down. and by now, i know asher, and i know what we would have lost if his heart got the better of him.

and now, here we are, six months later. as i type this post, asher is at school, playing with his friends, playing on the computer, singing songs and learning and... well, living. i'll admit, in april, i would have told you that this likely wouldn't happen. and yet... it's happening!!!! asher is alive!!!!

so i want to take this opportunity to thank all of you, our wonderful readers, for all your prayers and thoughts and love. you have given us both so much strength and courage to get through all the horror, and the grace and joy to fully embrace the normalcy. thank-you so much. we couldn't do this without you.

the mind of a 3-year-old

2010-09-27T16:38:00.000-04:00

for his after-school snack today, asher had apple slices. as i type this, the apple slices are on the floor.

ME: asher, can you please pick the apple slices off the floor?

ASHER: but dat not me. day do dat demselves.

mhm. the apple slices jumped out of the baggie and landed all over the floor... by themselves. yup.

i think some EEG leads would be helpful to have around the house [wink]

2010-09-22T16:38:00.002-04:00

so, asher went for an EEG this afternoon. it was interesting.

i picked asher up from school. he'd had a great morning! he went to the gym with another little boy and they played with frizbees, and asher LOVED that! he was talking all afternoon, "i hab da red fizbee, mommy. also, da udder liddle boy hab a pink one. and we frew dem around. it was fun, mommy!" i have to say, i'm glad asher is still getting some phys ed-type activity. as much as he loves computers, i'd hate to think that they would simply replace phys ed with a desktop. so he got to run around and play in the gym with another child, and that was awesome. he also made a nice little craft this morning with yellow cardstock (that's my boy!) and some scissors (fine motor skills extraordinaire!) and glued the pieces together to make an "airplane" for himself and a "car" for me. as you might expect from a 3 yo, they looked nothing like an airplane or a car, but he was excited about his craft. he's doing so well in school, it's just wonderful to see how much he's maturing and growing up after even a couple weeks in school. honestly, it makes my heart go up. waaaaaay up!

and then we went to the hospital for the EEG. as he was sitting in his seat behind me in the truck, i checked in the mirror and he was staring out the window. so i reached back to tickle his leg (just ignore the bad driving habits and keep moving along in the story, people, there's nothing to see here). and his response? he stared out the window. so i tickled him again. still staring. so i called his name. still staring. after several more seconds, he started playing with his pacer protector.

and that, dear reader, is how one describes an absence seizure, aka "petit mal" seizure.

now, i have to be honest here. i'm having trouble with this diagnosis. maybe it's that it's still so new, maybe it's that i don't know enough, maybe it's how powerless i feel when he has these seizures. and he's having so many. i've been noticing at least 2-3 a day now. and then that makes me wonder... how long has this actually been going on? i never really paid attention to it before, because i never knew to watch for it. but now that i recognize it, it happens so often... and there's nothing i can do about. i just have to roll with it, document it, watch for things like eye twitching, make sure he doesn't drown in the tub, but other than that, there's nothing i can do. i'll get past this, i know i will. i had the same fears in the early days, when asher was newly-diagnosed with HLHS. but i adapted and learned and i no longer feel helpless and guilty and powerless and afraid when it comes to asher's heart. but this is his brain, we're talking about. i guess i've always figured that the heart and brain are the two organs you want healthy, for some reason. not that the others aren't important, too, but i think i've always taken comfort in knowing, sure, his heart's pretty wonky, but hey, at least his brain is ok.

and now, his brain is not ok.

again, i will get past this. i know it's not his major health issue, so i take some comfort in that. meanwhile, please pray for me a bit that i can get past this.

ok, so on to the EEG. we arrived at the hospital and and asher handed the clerk his cards and we were registered. asher was pretty disappointed that they didn't have stickers to put on his hospital card. (he likes to collect stickers on there, and he only has one right now. his old card, which one clinic kept, had about seven!) and off we traipsed to the lab.

they took us straight in, and asher was delighted to see all the nemo and fish stickers on the wall. his faves were Dory and the dolphins jumping out of the "water." while the lady put all the leads (23 of them!!) on his head, he was quite the little chatterbox. it was so cute! he told her all about school, blivey and brammy, and smokey and the kittens. the tech asked me at one point, "is he always this well behaved?" "he's used to tests," i answered. and then the test started.

now, for those of you who have never experienced an EEG, you have to be very still and quiet. for the whole test. which should take about 40 minutes. and knowing asher and his energy levels, i was afraid we'd be there for hours. well, guess what!! the test took about 40 minutes!! he had to lie still, which he did, for the most part. we only had to tell him three times to stop moving and close his eyes, which surprised me... and didn't surprise me (see "he's used to tests" comment above). but his favourite part of the whole test was the strobe light. he was almost laughing out loud during that part! but he didn't, and it went well.

so now we just wait for the results. and a note about the results: if it's positive, it's positive, and they will know what's going on in that little brain of his. if, however, the results are negative... yeah, that means nothing. haha apparently, there's a 50% chance of a false negative with an EEG. the neuro told me about a patient of his with severe epilepsy, and it took eight (count 'em!) EEGs for anything to show up, even though they knew she was having seizures frequently. gosh, isn't that reassuring. haha know what's nice? tests with actual answers. i like those. they please me, on some weird level i don't fully understand. ok, i lie. i know exactly why i like answers. ready? here's why: because they're answers. and then we know what we're dealing with, and i can read up and watch for symptoms or whatever, and we can do something. ok, mostly it's because i get to learn new stuff. i like that. it's just so interesting!! sure, it's a bit horrifying and nauseating, but it's interesting, too. (which really just confirms what i've been saying about myself all along: i'm a nerd.)

so now, given how calm and quiet asher was during the test... do you think they'd give me some EEG leads - just the leads, not the whole, um, test-doing-contraption-thingy (where's a dictionary/thesaurus when i need one?!) - to have at home? you know, for when asher's all wound up and running around like the tasmanian devil/energizer bunny that he is... it might buy me 40 minutes of quiet... sigh... a mom can dream, right?

it's asher's first FULL day of school today...

2010-09-20T11:54:00.001-04:00

so, of course, i'm blogging about it. (did you expect me to not post here about this?)

asher has been doing very well in school. he is loving every minute of it... or... um... almost every minute of it.

on his second day, he was sad and crying in the morning, so his EA took him over to see bram, who gave him a big hug and made asher happy. i loved to hear about how supportive my older kidley-winks are with their little brother. it makes my heart go up, it really does.

so this morning, i was getting the kids' lunches ready, and asher came into the kitchen. "what are you doing, mommy?" "i'm making your lunches for school today, sweetie." to which he replied, and i quote,

"I NOT WANT GO TO SCHOOL, MOMMY!!!!!"

"what? what's wrong? don't you like school, hun?"

"no. i not like school anymore."

"how come?

"because day get mad at me."

"you mean when you wanted to play on the computer and they said 'no'?"

"yes. day get mad at me."

now, let me explain this. on friday morning last week, mrs b introduced the new centres that hadn't been opened yet. one of those centres was the computer. asher, it would seem, wanted to play on the computer right away. they told him that he would have to wait for his turn. anyway, this was not what asher wanted to hear, and well, in true asher-doesn't-know-crying-is-bad-for-him form, he got upset. and so, today, he not want go to school because day get mad at him. {rolls eyes} i tried to tell him that he will get a turn, and he'll be spending a lot of time on the computer, probably starting this week, but nope. he not like school anymore.

now, all that being said, i got him dressed without incident this morning, and we piled into the truck and when i dropped the kids off at school, he grabbed his backpack and ran after blithe and bram, who were taking him to the kindergarten doors. no complaints, no "i not want go to school," nothing. just smiles and running off to his class.

now, you may notice in that last paragraph that i drove the kids to school. "but, heather," i hear you asking, "why isn't asher going on the bus? were you running late this morning?" haha you'd think so, but no. i got up after only 4 hits on the snooze button (roughly 7:40), and everything was running smoothly and on time. so that was not the issue... today. (why, no, i love mornings. why do you ask?)

asher had been taking the bus to school. and then the school called one afternoon last week, and he will need to be on a special bus. he will have a car seat and get picked up and dropped off right at home, and there will be someone on the bus who can watch for asher's, well, asher-ness. it's just that the regular school bus isn't a safe place for him. and frankly, that's fine with asher. because he "not like da bus. it scary. dare too many people dare." so i'm hopeful that the change to a different busing situation will be smooth and asher will adjust well.

now, on a different note, asher decided on friday that he wanted to play on the computer. i set him up with his favourite site, and he said, "mommy, i not need help." and you know what? he didn't!!! he just played away on the laptop for almost an hour, perfectly content, clicking away all on his own. he did amazingly well. as he sat on my lap, i watched in amazement as he handled the somewhat-tricky finger-pad-thingy and clicking the button there, making pictures, playing songs, putting animals in the appropriate habitats... it was truly incredible. i was so impressed and proud.

maybe it's not such an impossible dream that he'll be the next bill gates or steve jobs... and i'll now add to that dream that asher will keep me in the lifestyle to which i would like to become accustomed. ;)

"mommy, you make percy beautiful for me?"

2010-09-13T13:37:00.000-04:00

i was asked to "make percy beautiful" with pale green sidewalk chalk.

asher approved of my work.

God aka our Refuge

2010-09-12T18:42:00.000-04:00

i was asked to share a little bit about the "asher journey" this morning in church. and when i say "a little bit," i mean... i was limited to 4 minutes!!! gah!!!! how to squeeze everything i wanted to say into such a short time?? but i managed... i think... i kind of ignored the clock. anyway, it was an interview, and while you all know the answers to questions 1, 2, and 4 (tell us about your situation; what has your journey involved, and how is asher now?), i want to share my answer to the third question.

what are some practical ways in which you have accessed God as your refuge during your journey?

it's an interesting question; i don't usually think about it so specifically. i just kind of do it without thinking about it quite like that. but i guess i would say that, for starters, as a single mom, i have been gifted with a lot of time alone. so i can spend that time thinking, praying, journaling, reflecting... that time with God allows me to rest, even in the scariest times.

the second thing comes from a rather morbid conversation i had with a dear friend when asher was about six months old. asher was very weak, very sick, and i knew in my gut that he was going to die in the OR. my friend said to me, "yeah, he might die during the surgery. but he might not. you don't know. you have no guarantees with him, but you have no guarantees your other kids will grow up, either. they're fine now, but things can change. you just don't know what will happen." and believe it or not, that conversation, as gut-wrenching as it was, opened my eyes to the reality that i really don't know. i don't know why asher was made this way, i don't know what the purpose is, but God knows, and that's enough for me. i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

finally, when asher was two months old, he was in the hospital. he was pretty sick, but no one could figure out what was going on. so one night, i asked God to heal asher. you know, the "big H" healing. and as clearly as i hear you today, i heard God say, "no, that's not the miracle I'm going to do here." so i've gotten to spend the last 3.5 years looking for the miracle. and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

there you have it, folks, for those of you who missed it this morning. it was a great morning; i talked with so many people after the services, including a single mom with three kids (now grown), and a heart family with the father and son with Tetralogy of Fallot. it was a wonderful morning, and i'm very, very grateful for being given the opportunity to share some of this story. thanks for interviewing me, ron, it was a great experience!

the second intake meeting... after, you'll note, they have... uh... taken asher in...?? somehow that doesn't sound right...

2010-09-09T17:15:00.001-04:00

well, the meeting happened this morning at 9am. there was the principal and the VP, the primary LST (learning support teacher for primary grades), the special education director-type from the board, asher's teacher, asher's EA, asher's paediatrician, asher's dad, me, and asher (though his contribution was mainly entertainment and some confusion, since how could we be possibly describing this child?? he looks so normal!!). here's how it went down:

we started with a run-down of his medical issues, and dr b went system by system, starting with heart. and yes, we got some of those reactions when she said, "basically, he has half a heart." you know the reactions i mean: the face of "shock." is it weird that they amuse me sometimes? (maybe i'm just too used to that phrase.) so that took a while, as you can imagine. and so the plan for the heart/pacemaker issues are this:

asher will wear his protective vest at all times. period. because you never know.
call mom.

we had to fill everyone in on a few things. the LST asked, "how will we know that he's going to faint? what sort of things should we watch for?" to which dr b and i replied, "you won't know. he'll just faint. but as soon as he's horizontal he'll wake up. it will happen when he's playing normally. and he'll just faint." you can imagine the looks we got for that answer. we also mentioned that asher is fine if he's pink or pale, and that he shouldn't turn blue anymore, so if he does, to call me, and that if he turns even faintly grey, call me immediately. don't even question; just call me. grey = bad.

when it comes to asher's immune system, it is slightly deficient (meaning, he lacks the generals that lead the troops into battle), but that he doesn't seem overly bothered by it. he hasn't had all the nasty infections that you would expect from a child with an immune deficiency, but... if there is any outbreak of anything in the school, let me know immediately, because even something simple can cause huge problems for asher.

asher's UTI habit came up, as well. the instructions for that were to let me know at the end of the day if he's been peeing more. we will have a communications book that travels with him between home and school, so they can fill me in.

but since we're on the subject of peeing... i reminded them that he is not fully potty-trained. he's poop trained, but he is still in pull-ups. this is due to the fact that a child on diurretics, who has always been on diurretics, is, well, difficult to potty train. he simply doesn't know what it is like to "have to" pee. he just pees. a lot. (oh, wow, asher's gonna kill me for this paragraph when he's older. LOL)

then we discussed the bus. ah, the school bus, bastion of normalcy. they didn't question the decision to send him on the bus, but they will make sure that he gets a medical tag to put on his backpack, so that the driver will know that he has some issues. the principal is working on getting that from the school bus company as soon as possible.

but i was delighted to hear that yesterday morning, the principal (mrs h) met asher as he arrived, and that he tried to jump off the bus. he was just that excited to arrive at school! if you know him at all, you likely aren't at all surprised to read that. and frankly, neither was i. he was sooooo excited to be a big boy going to school and riding the bus. honestly, if she had told me that asher simply climbed off, i would have been surprised. he's just not that mellow. haha

the other issue with bussing is this: when asher arrives at school, blithe will hand him off to his EA who will bring him into the school immediately. he will also have a space for his bag, coat, etc separate from the other kids. this is to avoid bumps, since that risk is highest (for everyone, actually) at in and out times. so asher will be safer in his own little area. and if the bus is late arriving, he and the EA will simply wait in the hall or outside until the rest of the kids are out of the cloakroom. also, at the end of the day, the other students will go and get ready for home, and then it's asher's turn, once they're outside. again, the risk of getting bumped is too high at this time for him to be safe, so he'll get a few extra minutes of playtime at the end of the day.

he will be allowed outside, but only with a few other kids at most. he will absolutely not be allowed onto the playground equipment (due to risk of bumps and seizures). it is simply too dangerous for him. but he is allowed to ride a bike in the kindergarten play area, so long as there is an adult and very few other children (if any). he will be staying indoors for most recesses.

as for phys ed... well, that's not an issue. because he won't be doing it. he will go into the computer lab when the rest of his class goes to gym. i'll admit, this is one of the areas that upsets me the most. he's so active, and he just sooooo wants to be normal because he is normal, and yet he won't get to participate in gym with the other kids. that's tough for me, but i know it's for his safety, so i'll accept it. i understand the reasoning, and i'm glad they're taking this seriously and making sure that he is safe. it's just that phys ed is too dangerous for him. those little kids can be too unpredictable, and so is asher. so it's a potentially bad combination. so there you have it. and on the plus side of this, asher is going to be the most computer-literate 3-year-old ever. (maybe he'll grow up and become the next bill gates or something. that would be awesome.)

we addressed the issues of his seizures, as well. these can be anything from a tonic clonic (sp?) seizure, with the shaking etc, to an absent seizure, when he just goes blank and unresponsive. this is one of the things that makes the playground so risky: if he has one of these seizures while climbing, he'll let go and fall and then... badness will ensue. i will be contacted if/when he seizes.

we discussed his migraines, as well, with this caveat: his migraines just start. there's no build-up. he'll be fine, and then he won't be. he will suddenly become lethargic, irritable, grey, confused and have a very high fever, which may or may not include seizures. so watch out for that, and call me if/when it happens. and if/when it happens, they are to give him a whopping dose of advil. and then call me.

we made sure they were very aware that asher gets very sick very fast. we laughed when i told them his nickname, "asher crasher." but i told him that he's earned it. he'll be fine one minute, and the next, he's at death's door. this is how he gets sick, regardless of what the problem is. we also told him about his "sick" language: he'll say something if he's dizzy, so there shouldn't be too much confusion there. but i also said,

"the other thing you need to pay attention to is if he says he's feeling 'much better.' he knows when he's sick, and he knows that means he'll go to the hospital. and he doesn't want to go to the hospital. so he says 'i feel much better' when he's sick. and if he tells you that, call me right away." they seemed surprised by that little nugget, but since we moved from that on to PTSD, they understood quickly.

and so, i move on to PTSD. they need to be aware that he may have some difficulty adjusting at times, that he may get very upset and just want mommy or daddy. at those times, call the appropriate parent. he is in play therapy to deal with that, and when he's in therapy and is handed medical-looking toys, he buries them in the sand. so in his classroom, there will be no hospital centres or doctor kits or anything. we want to make sure he has a happy time in school, so we're just going to avoid those triggers completely.

his teachers are going to talk to the students in his class in the simplest, non-discriminatory terms. they will tell the students that asher may need some help from time to time, and that if something happens like he falls down, they need to tell a teacher right away. if they do this, they will be helping asher. they won't be going into any real detail, but for example, when asher faints, it happens so quickly that a teacher simply might not see. but the other kids will see it, and this is how they can help asher and be a good friend to him.

asher will also be assessed by OT due to his oral sensitivities/needs, and PT to see if there are any activities the EA can do with him in order to help with gross motor development in place of phys ed. the wait for these assessment is relatively short, so this will happen fairly soon.

all in all, it was a good meeting. very productive, and we're now all on the same page. we filled out the forms for him, so that they can give him meds and post his info for the teachers and in the teachers' books, so everyone will know him. asher also got his picture taken today, so all the staff will know what he looks like. generally, i'm happy with the plan. again, the plan to keep him out of phys ed is mildly upsetting to me, but i understand the reasoning and i'd rather have him safe than happy, if those are my choices. our goal is for asher to have a safe and happy time in school, and i think we have a plan in place that can give him that. i'm pleased with all of this, i really am. i can't wait for him to go back tomorrow. he's going to have a wonderful time in school this year!

it's a good day. for sooooooooo many reasons. :)

2010-09-08T21:24:00.003-04:00

asher started school today, although if you've been lurking here lately, you knew that already. [wink] so here's how it went:

i got to the school at noon to pick him up. i went down to his class, where asher's bag was already packed and waiting for him at the door. i met the ECE (early childhood educator, who is standard now in the full-time kindergarten classes in ontario) who was lovely, and the EA (educational assistant, for asher because of his special needs), and she, too, is delightful. they were all very happy with him today. hooray!

they said that he was very good, he was well behaved, including tidying up as soon as the bell rang. (as an aside, i am now considering getting a bell to have at home. pavlov might have been on to something, methinks.) he played with lego, blocks and cars, and when i asked him if he made any friends today, he said, "yeah, brammy's friends are in my class." see, in our neck of the woods, junior and senior kindergarten are blended; bram was in mrs b's class for two years, and he had friends last year who are now in asher's class. i like this. since asher has heard all about these kids for so long, they're somewhat familiar to him, and i think this will help him to transition a little bit easier. he had a wonderful time, which thrills me to no end and makes my heart go way up.

asher wore his special vest under his shirt with his pacer protector. i had sent along a note explaining that the pad was to be worn on the bus and playground, in the gym, and during any activities during which there is a reasonable risk of his pacer getting bumped. the rest of the time, it can simply be removed and kept in a safe place. and they did that. and i was happy.

the EA said to me at one point, "i kept him in while they went outside. i hope that's ok." "oh, yeah," i reassured her, "that was part of the plan we made in june, so i fully expected him to stay in today." "oh, good," she sighed, "i'm a bit paranoid when it comes to him." i laughed and said, "probably a good idea."

i'm not sure which one of them will be joining us for the (second) intake meeting tomorrow morning. but i'm hopeful that tomorrow's meeting will be productive, that we will all be on the same page, and asher will have the best year of junior kindergarten possible. i'm not worried about the meeting; asher's dad and i will both be there, as will his paediatrician. this makes me happy, since asher has now dealt us a new layer of complexity (epilepsy). this will seal the deal on things like phys ed, the playground equipment, that sort of thing. that will be too bad for asher, but he will also have the opportunity to make friends in the other kindergarten classes and enjoy books (which he does already. how proud am i, eh?) and learn to use the computer. again, i'm hopeful that the plans we make tomorrow will allow him to thrive in a safe and creative environment for him, one in which he will not feel too centered out but in which he can just be one of the kids, all normal and happy and sparkly like he naturally is.

so there you have it. the full report on today. and now, i'm off to watch the end of MasterChef. fingers crossed for sharone. LOL

ASHER'S FIRST DAY OF SCHOOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2010-09-08T11:14:00.003-04:00

his bumblebee backpack. it's so huge on him!

look how proud he is of himself.

LOOK AT MY LITTLEST MAN!!!!!!!

this is asher, waiting for the school bus. he was soooooooooo excited to go to school today!!!

right now, as i'm typing this post, asher is at school. his first day of JK. my little man is growing up!!! one of the moms at the bus stop asked if i was going to cry, and i'm going to be honest here, i'm not crying. i'm actually overjoyed that this day is here!!! my littlest man is going about his normal life, doing all the things that normal kids do, and he couldn't possibly be any happier, and frankly, neither could i.

there was a bit of a hiccup yesterday with the whole "asher starting school" thing: the VP called and said that she would like to have another intake meeting because "i understand asher has some health issues." she wasn't aware that asher would only be going for half-days at first, and she seemed surprised that he would be riding the bus. i said, "of course he'll be on the bus! that's one of the things he's most excited about!" "well," said she, "the bus can be pretty dangerous. it's bumpy, there's a lot of jostling..." so i told her that asher is not on a strong blood thinner, and he's got a protective vest over his pacemaker, and blithe and bram are very protective of him, and he will be fine. so she accepted that. i'm afraid that they are now expecting asher to be very frail and fragile and lethargic and all things stereotypical heart/SN kid. wow, are they ever in for a shock! so we will be meeting with the VP, LST (learning support/special ed teacher) and the teacher, EA or ECE from asher's class. asher's dad and i will both be there, and our paediatrician is also planning to attend. i told the VP that i would bring my notes from our meeting in june and we'll get all caught up and make sure we're on the same page. i think the meeting will go very well.

ok, i should go now. i will be picking asher up from school in about 45 minutes, and i'm eager to hear from him how well his first day went. i'll fill you in later today with his version of events. :)

"human beings have the remarkable ability to adapt to anything." ~ Dostoyevsky

2010-08-29T15:52:00.004-04:00

i was emailing back and forth with someone the other week, and she made an interesting comment. we were talking about a heart kid and his mom, what they were going through at the time, how to help, that sort of thing. and she said something that, for some bizarre reason, caught me off-guard and stuck with me, and i've been thinking about it ever since. i don't remember the exact context, but she used the phrase, "you moms who deal with so much more than the rest of us."

why did this phrase stand out to me? i think i know why:

it never really occurs to me that i do deal with more than anyone else. is that weird? and i'm not trying to be funny here or anything. i'm being completely serious. i don't actually see this life as being anything "out of the ordinary." and don't forget, asher is not my only child. i have two older kids, who are completely healthy. bram had some dental work a couple years ago, but that's it. and blithe has never had anything more invasive than a flu shot. so it's not like heart life is all i know of parenting. i know the life everyone else takes for granted. so why do i not think of SN life as anything other than average?

honestly, i don't know the answer to this question. i have some theories, mind you, and i'd like to share them with you:

my parents. for those of you who know them, that's all i need to say. for those of you who don't... they're amazing. they have been such a help to me over the last few years. this spring, while asher and i were in the hospitals, blithe and bram went to stay with my parents. for six whole weeks. and my parents were here yesterday helping me out with stuff around the house and watching the kids while i went out. they are unbelievable, and i couldn't do this without them.
i have an incredible support network. i really do. i was blessed with a multitude of people who pray for us, visit us, help us. when asher was in london PCCU with a heart rate of 30, i called a friend at 12:30 at night. when they answered, i just burst into tears. no hello, no "it's heather," nothing. just sobbing. my friend said, "i'll be right there." and in less than 15 minutes, i was drinking a fresh timmies and bawling while my friend handed me kleenex and listened. that's just one example. another example would be the two friends who were with me in the waiting room during asher's fontan. and those same friends visited me in the hospital, called when they couldn't make it in, and updated the blog for me. someone else sent out an email to dozens of people as soon as he heard about asher's pacer infection, and within an hour, hundreds of people were praying for us. i could go on, but you get the idea. my kids and i are loved.
call me crazy, but i don't believe there is actually anything "wrong" with asher. there are plans for this boy, big plans. divine plans. and none of them could happen if asher had a healthy heart (etc). and because of that, i can go about this life knowing that somewhere, somehow, something God-esque is going to happen. and in the meantime, i get to watch for it. how cool is that?

there are a couple other considerations. one of the them is this:

we started off with "your baby is going to die. so pull yourself together and say your good-byes." and let me tell you, there is no worse news than that, my friend. none. so after hearing those words, everything else has been a bonus. because, you know... it could be worse. we could not have to deal with this stuff. we could not have to make all those trips to emerg. we could not have all these specialists. we could not have all these admissions.

now, don't get me wrong. i'm no pollyanna here. i don't see this life as being all sunshine and rainbows. because, quite frankly, sometimes it sucks. but you know what? it sucks when your healthy 7-year-old has tonsillitis. it sucks when your 8-month old has a cold. it sucks when your teenager rebels. it sucks when your toddler walks into a doorknob. it sucks when your grown child has cancer. but...

it's amazing when your child wakes up and runs into your room and says, "mommy, i just love you soooooo much!" it's amazing when your child starts school. it's amazing when your child says, "mommy, i do it myself." it's amazing when your child laughs. it's amazing when your child naps. it's amazing when your child holds your hand to cross the street. it's amazing when your child moves from the crib to a big-kid bed. it's amazing when your child practices "criss-cross applesauce, hands in your lap." it's amazing when your child gets dressed on his own for the first time ever. it's amazing when your child draws you a picture. it's amazing when your child washes said picture off the wall (true story). it's amazing when your child kicks a ball around in the backyard. it's amazing when your child crawls into bed with you at night. it's amazing when your child's face lights up when thomas comes on TV. it's amazing when your child has fun in sunday school.

perspective is a good thing. when i "knew" that asher was going to die during the glenn, i was talking about it with a dear friend. she said, "you don't know he'll die." "oh, yes, i do," i sobbed, "he's not going to grow up. he's going to die very, very soon." "you don't know that," she repeated, "you don't know. sure, he might not survive. he might die next week. but then again, he might not. and you have no guarantees blithe and bram will grow up. they could get sick or fall off a swing or whatever and die. i don't want those things to happen, but you never know. you just don't know." and you know what? that morbid little line, that reminder that i have no guarantees about my other kids, gave me so much hope for asher. i have no guarantees with asher; he might not grow up. but you know what? he just might. so while he's here, i'll just find joy where i can. sure, it's pretty freaxiating at times; i don't deny that. again, i'm not living in a dreamland here where everything is hunky-dorey and lollipops and cotton candy. i'm living in reality here, and sometimes that reality sucks. it hurts and it's scary and it's harder than you can even imagine (if you're not living it, that is). but i choose not to dwell on all that. i choose to enjoy this littlest man of mine. it's hard sometimes, i'll admit. but there's (almost) always something in every situation to rejoice in. asher's smile and pink toes post-fontan. a visitor bringing baskets of candy, chocolate and reading material while we were in PCCU. onion rings with gravy. poutine. bawling and laughing (simultaneously) with a friend. these are some of the blessings. and i hold those very close to my heart all the time, because otherwise, i would suffer way more than i actually do.

i don't deal with "so much more" than anyone else. i just deal with different things. we all have a lot to deal with in life from time to time. i don't think i could ever move across the country, away from my family and friends. i don't think i would be all that comfortable with immense wealth (i'm weird, i know). that being said, i could never cope with intense heat, war and abject poverty. there is no way i could deal with a cranky child (which is why two of my kids have names that mean "happy"... and yes, asher is one of them). i don't do loneliness well. i would freak out if there were lions prowling the streets. i am miserable without God, friends, chocolate, coffee, and poutine. i know people who have these situations in their lives, and frankly, i don't know how they deal with it. (ok, i don't know anyone who has lions prowling the streets. that was a joke from a friend in south africa.)

but dostoyevsky was a wise man. he wrote, "human beings have a remarkable ability to adapt to anything." and it's true. this is my normal, and there are some people reading this who might not be able to cope with it. but to be fair, i don't think i could ever deal with your normal, either. we're given what we can deal with, and what is stressful to one person is no big deal to someone else. and that includes heart life. it's all relative.

in the ping-pong game of hospital life, asher and i are the ball.

2010-08-27T15:04:00.000-04:00

remember a few weeks ago when dr w suggested discussing asher's fainting etc with neuro? and remember how neuro said, "fainting is caused by a sudden drop in blood pressure. so it's cardiac." so i called cardio.

don't get me started about the NP. i'm too annoyed. (although, i'm so glad she cleared up one mystery for me: according to her, epilepsy is a seizure disorder. i'm so glad she enlightened me.) anyhoo...

she put me through directly to dr w. so i told her that neuro said that the fainting and dizziness etc is definitely cardiac. so here is our plan for the time being:

we're going to try fiddling with his meds a little bit. asher has been on three meds for a while now. two of them are specifically for blood pressure (ramipril - an ACE-inhibitor - and hydrochlorothiazide - a diurretic), and aspirin, which asher is on for some mild blood thinning, can also decrease blood pressure. dr w thinks that perhaps three meds working to lower his blood pressure might be a problem.

now, due to the fontan, asher needs to continue on aspirin for the time being, so we can't stop that. and if he misses one dose of the diurretic, he puffs up, so we can't fiddle with that, either. which leaves ramipril.

asher has been on ramipril since March 2009, and it has done well for him, improving his function when his heart was trying to fail. but things have changed in there now, and due to the great gobs of oxygen and decreased workload for his heart, his function has improved. the other consideration is that fontans don't always tolerate ramipril very well. so she believes that this med is the culprit behind the dizziness and fainting.

we're going to keep an eye on him over the next little while to see how he does without it. we go back to clinic in october, and that gives us a good chunk of time to figure out if this is the right way to go. this also means that we are avoiding anything invasive, at least for the time being. if the issue is blood pressure, it should help him to stop this med. if there is no change, if asher continues having dizzy spells (most recently, he had one yesterday morning), then we will have to keep looking.

i'm hopeful about this plan. it certainly beats a cath and arch reconstruction, if you ask me. so we'll see how this goes.

update on Ali

2010-08-25T11:48:00.000-04:00

sorry i haven't posted recently about ali. i hadn't heard anything for a while there, but i now have amazing news!!!

ali went home on monday night!!!! he is weak, pale, and has lost a lot of weight, but he's home!!!!!!!!

i can't tell you how happy i was to read this on his mom's facebook!!! it was a really long and scary admission, but ali is home to enjoy the play equipment he got through Make-A-Wish. thank-you all so much for your prayers, vibes, crossed crossables and so forth.

even i cannot come up with a clever caption for this pic! LOL

2010-08-25T00:01:00.000-04:00

asher's dad just sent me this pic. asher likes to cuddle in his sleep, can you tell?

would it surprise you to know i spent last night reading?

2010-08-20T11:49:00.004-04:00

no? ah, you know me well. ;)

well, here is what i found: epilepsy adds yet another layer of complexity to asher's already complex health and treatment. take some of these statements from an article i read:

Isolated seizures can transiently influence cardiac function, and epilepsy, if not managed appropriately, can lead to serious cardiac dysfunction.

gosh, isn't that fantastic. basically, it means this: seizures can cause a heart to fail. this is rare in patients with a healthy heart. but the problem is that asher's heart is not in the greatest shape, he lives with congestive heart failure, and one cardiologist, when asked just how much seizure activity asher's heart can tolerate, answered "not much." too much seizure activity is not good for asher's heart.

but, you'll note, having epilepsy means that asher is prone to seizures.

On the other hand, cardiovascular disease and treatments can precipitate new seizures or alter the management of pre-existing epilepsy.

heart disease and treatments can cause seizures.

asher has heart disease. and he is being treated for it.

so, you see the problem here. seizures can cause the heart to fail. and a failing heart can cause more seizures. which can lead to more failure. which can lead to more seizures. which can lead to more failure. which can lead to more seizures. and so on, and so on, and so on, and so on.

isn't neurocardiology fantastic? (the article i just linked to is where i got some of the information for this post. it's actually quite interesting.)

check this out:

Brain ischemia [...] can cause seizures.

what's "brain ischemia," you ask? it's a sudden decrease in blood flow to the brain. you'll note, this is also what causes fainting, as per the neurologist. you'll also note, asher fainted the other week. twice. (is anyone else nauseous right now, or is it just me?)

but, what would cause brain ischemia, you ask? well, how's this for an answer, again from the article:

Structural cardiac disease and arrhythmias cause impaired or turbulent cardiac output. The result may be poor cerebral perfusion.

translation: when there are problems with how the heart is built (and/or rebuilt), there are problems with how the blood leaves the heart and goes to the brain. arrhythmias also cause this.

asher has structural problems with his heart, and he has arrhythmia. and these issues, because of the issues with blood flow to the brain, cause seizures. which diminishes heart function. which, you'll remember, leads to more seizures.

the article also lists cardiac conditions and treatments that can "lower the seizure threshold" (the minimal conditions necessary to produce a seizure). four of these are congestive heart failure, congenital heart defects, "cardiac surgeries and other interventions," and heart meds. there are others, but i listed the four that apply specifically to asher.

ok, now, i realize that this all sounds pretty terrifying. and i'll admit, right now, i'm more than a little worried. give me a couple days, once i've sorted this all out in my head, and i won't feel so bad. but it's still very new and fresh, and i just need to get all this out before it really starts messing with me. but you know that i will be calling cardiology today, in london, and probably in toronto, too. i just need some reassurance right now. thanks for humouring me today.

A Wonky Kind of Beautiful

to my sweet littlest big boy,

i heart our respirologist.

Asher requested this specifically

WOW!!! has it really been 2 months since i last posted?! CRAZY!!!!!

the long-awaited update...

wow, where do i even start?!

it's the afternoon of our resp appointment...

it's the morning of our resp appointment...

well, our streak has come to an end... but now we get to start over! tomorrow is Day 1. ;)

sometimes you just gotta shake your head, shrug and say, "whatever!"

don't know why it's taken so long to update here...

blogger asher!! :)

in his own words...

sorry for the absence...

and the post i started yesterday was going to be so different...

i heart laundry.

my littlest man is an artist!!!!

sshhh... don't tell Murphy, but...

so much sweetness

well, what do you know...

well, it was a day...

quite an interesting day today...

surrendering is NOT the same as giving up.

oops, my bad...

nothing good comes from a 4 year old flirt

sigh...

my bad :S

well, one year later, here we are...

asher prayed this week, "God, i want to be your personal penguin."

um... ok...??? aka, why i'm really starting to believe in multiple universes. aka, blerg. :S

technology is great... until there's a glitch. {wave of nausea}

asher's new "best" song

on chest infections and immunology...

and now for something completely different...

NNNNNNNNNNNOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! a true story.

an open letter to my sweet, sweet Asher.

CHD. a most beautiful gift.

How CHD messes with your head... or maybe just how Asher does... hard to tell sometimes...

would i have named my son *asher* if i ever thought he'd turn the colour of *ash*?

a quick update about clinic yesterday...

for the newer readers, "freaxia" is a horrid combination of fear, dread, anxiety and nausea. blech.

well, today *could* have really, really sucked...

so much has happened since the last post... don't worry, some of it's great!

k, it's been a while...

last night as i lay cuddling...

as 2010 becomes 2011...

christmas 2010

on this day in history...

it's a sad day today.

66 years ago today...

how AMAZING!!!!

in case you were wondering...

dude, you are such a dude!!!

look what my baby can do!!!!!!!

the times, they are a-changing

prayer requests

and then, of course, God weighs in...

crystal balls, looking back, and the unanswerable questions that break my heart

happy hallowe'en!!!

WHA-?!?!

the update you've all been waiting for

some musings here... nothing urgent about asher. just me and my faith journey. so don't feel you need to read if you don't want to. LOL

the plan for tomorrow

can you believe, we actually got to see a couple DOCTORS this weekend!!

days like this... i wish there was no such thing as CHD

what a difference a pacemaker makes

the mind of a 3-year-old

i think some EEG leads would be helpful to have around the house [wink]

it's asher's first FULL day of school today...

"mommy, you make percy beautiful for me?"

God aka our Refuge

the second intake meeting... after, you'll note, they have... uh... taken asher in...?? somehow that doesn't sound right...

it's a good day. for sooooooooo many reasons. :)

ASHER'S FIRST DAY OF SCHOOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

"human beings have the remarkable ability to adapt to anything." ~ Dostoyevsky

in the ping-pong game of hospital life, asher and i are the ball.

update on Ali

even *i* cannot come up with a clever caption for this pic! LOL

would it surprise you to know i spent last night reading?

would i have named my son asher if i ever thought he'd turn the colour of ash?

well, today could have really, really sucked...

even i cannot come up with a clever caption for this pic! LOL