the long-awaited update...

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.

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

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."

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

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.

nothing good comes from a 4 year old flirt

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...

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

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! :)

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

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.

the times, they are a-changing

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

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.

WHA-?!?!

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 plan for tomorrow

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.

i think some EEG leads would be helpful to have around the house [wink]

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 a good day. for sooooooooo many reasons. :)

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

if this is friday, it must be cardio. just cardio, though.

as the title implies, we went to cardio in london today for an echo. they were looking at asher's arch, to see if that is, in fact, the problem.

turns out, it isn't.

so the theory goes, anyway.

the echo found no "significant obstruction in the aortic arch." which means, for those who don't live in cardiology clinics (and of whom i am often insanely jealous) that blood is flowing nicely through the arch, as it should be.

which means that the arch is not the cause of the dizziness, fainting, and other miscellaneous cardiac symptoms.

dr w said to discuss with neurology next thursday when we see them. the hope is that they can explain the symptoms. and if they can't...

and if the symptoms continue...

i am to call dr w and she will order a cardiac memo so that we can find out exactly what asher's heart is doing when he has these episodes. the test usually lasts 4 to 6 weeks, which means that they should be able to find something, if there is something to find. there is usually a wait to get one of these devices, about 3 to 4 weeks.

so basically, we are now in yet another "wait and see" pattern. who knows? asher seems to be doing much better these days, so all the hoopla of the last couple weeks may be over. at least, i hope it is. i'm getting pretty tired of cardiology, believe it or not. 

and a quick update on Ali: he was transfered to SickKids this morning. generally, he is in pretty rough shape (hence the transfer). please continue to hold him and his family in the Light, and i will continue to keep you posted. thanks.

a quick update

i just realized i hadn't updated you in a couple days. sorry about that. anyway, for those of you who are dying to know and waiting impatiently for some news, here you go.

the holter showed nothing, as i expected. dr w suggested that i mention the fainting and dizziness to the neurologist when we see him next week, because if the problem isn't cardiac, it might be neurological.

asher seems to be doing better. he hasn't fainted in quite some time, and he doesn't seem to be getting dizzy anymore... at least not that i've noticed, and since he doesn't tell me, all i can go by is drunken stumbling, and there's been none of that, so i'm assuming here. he has been pale over the last few days, but it's humid, so i'm brushing that off. his nose isn't runny anymore, and while he is sweaty off and on, like i said, it's been humid, so i'm not worried.

all that said, we're still going in for an echo tomorrow afternoon, and they're going to look at his arch. but the doc may just be humouring me at this point, but we're still going. because i still think it might be a concern, even though the symptoms have mostly disappeared. remember that it hasn't grown in over 2 years, but until recently, neither had asher. which meant that he had the same amount of blood going through as he did 2 years ago. but now that he has gained some weight and started growing, there is more blood trying to get through a vessel that hasn't grown, and this can cause the very symptoms asher had been having.

but i don't think it's urgent anymore. i'm not freaking out. i'm at the point now where i'd like it investigated, but if they find nothing, i won't be devastated and frustrated anymore. who knows, the whole thing may just have been asher's bi-monthly failure scare.

i'll let you know what the echo finds tomorrow.

in the meantime, please continue to pray for Ali. he is going to SickKids today. he is still intubated, and he needs a chest tube. he is getting TPN and had a transfusion yesterday. plastic bronchitis isn't pretty, and well, there isn't much they can do for it. the transfer to SickKids is good because they have more cardiac resources than london, but on the other hand... it means he needs more help than london can give. please pray for him and his mom, Shay. this is so hard on her, to watch her son suffer like this. i know those feelings well, and it's a brutal place to be in. so hold them both in the Light, and i will keep updating here so you're in the loop.

please pray

i went to visit a "friend" today... it's in quotes because i'd never actually met her, but she's on my facebook and she's a heart mom, so it counts in a strange, 21st century kind of way...

shay's son Ali is in PCCU in london right now. ali has HRHS (like asher, but the other side of the heart). he is 5 years old, and he has plastic bronchitis (a complication which only happens in kids who have had the Fontan, which Ali had 2.5 years ago, and it has been a constant problem ever since).

he is not doing well.

he is in surgery right now. he has a chunk of something gross (a "cast") blocking his right lung and there is a nasty infection in there. he has been intubated for a few days.

his mom is really scared right now. i won't go into detail out of respect for her, but this is not good. please please please pray/send good vibes/cross crossables for Ali and Shay right now. whatever is afflicting asher is nothing compared to this, so please hold them in the Light. i will try to keep you posted. thank-you.

ah, the holter...

well, it's done now, and asher helped me to remove everything from his chest and stomach. so the test is officially done. and guess what happened in the 24 hours?

nothing.

well, no. i shouldn't say that. he got a bit dizzy while helping to unload the cart at the grocery store. needless to say, the lady behind us looked at me like i was crazy when, in the midst of all that activity, i turned and asked her the time and pulled a paper out of my purse to write something down. but whatever. she doesn't know what's going on.

and asher got a bit dizzy at one point yesterday evening, and last night at bedtime, he had a few other symptoms. he was very sweaty on his head (and i mean, his hair was actually wet! yuck!), and his hands were very, very grey. during the night, he woke up once crying, which he never does unless he wakes up dizzy. don't worry, all this got recorded in the diary, but somehow i doubt that anything will show up on the holter. sigh.

but meanwhile, though i really want some answers right now, i have some peace. we'll get answers soon, and  we'll get asher all fixed up... again. it will be ok. thanks for the prayers over the last day or so, but please don't stop praying; we're going to need plenty while this all gets sorted out. thank-you.

psalm 27:14

the "emergency" cardio appointment

we just got back from cardiology, so i thought i'd post about how it went. i'll start with the good news.

his sats were 98%!!!!!!!!!!!!!!!!!!!!!!!!!! i just can't get used to numbers like that! we spent so long in the 60s to low 80s, and now that he's (usually) in the high 90s, i still haven't really adjusted. it still just makes me happy.

and that's the good news.

ok, now on to the rest of the appointment.

his blood pressure was... um... interesting. 110/82 in his left leg, and 90/63 in his right arm. the gradient (difference) is better than it was last week, but it's still pretty big.

then we went to see dr w to check the pacemaker. the chest x-rays last week showed nothing wrong with the leads, which means that electricity is getting from the generator to the heart without interruption, so that's good. and when dr w investigated the generator today, she found... nothing.

there's nothing wrong with the generator. at least, nothing that showed up, anyway. so they put a holter on asher, and he'll wear that until tomorrow afternoon. we'll take it in on monday, and dr w will review the results as soon as she can (it can take a couple days to get the information out of the holter). i mentioned to her that i had a couple other ideas about the cause of the problem. when i told her about the arch, she said that once she gets the holter report, if it's negative, they'll keep looking. she asked when we're scheduled for another echo, and when i said october, she said that she'll get us in sooner to have a look specifically at the arch.

i've gotta say, i'm now exhausted. i may just end up taking the kids out for supper tonight, just so i don't have to cook, because i don't think i should be around anything sharp or hot right now. haha and i just want to cry. i was actually hoping she would have found a huge problem with the pacemaker. at least then it's something simple, and even more importantly, it's an answer. alas, not in asherland. so we wait.

so here is my prayer request for tonight: please pray that asher blacks out. it doesn't have to happen tonight. anytime between now and 3:00 EST tomorrow afternoon. that way it will show up on the holter. and if you feel weird praying for something bad to happen to the wee lad, pray for dizzy spells... and that he tells me when he's dizzy. i know it sounds strange praying for weird symptoms, but this way they'll be recorded and the docs can see what his heart is actually doing when he has them. thanks so much.

psalm 27:14

no, i hadn't forgotten about you... i just *really* don't want to post about this...

yes, i know, it's been over a week since i last posted here. and i know a lot of you are going to be thinking, "wow, things must be going great in asherland!" sadly... not so much.

after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."

note the word "again." isn't that fantastic.

when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.

and he was dizzy again on saturday.

i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.

then, on saturday morning, he fell down in the driveway.

and hit his head on the ground.

so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.

he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.

the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.

of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.

"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.

"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."

"asher, when you fell down this morning, did everything go black?" "yeah."

does anyone else want to vomit right about now????

so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.

needless to say, they didn't find anything, so they sent us home.

cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.

so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.

in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:

1. pacemaker malfunction. this would be the "simplest." i put that in quotes because if it's malfunctioning, it would not be firing when he needs it to, and i'm sure we all remember that now, asher's heart doesn't like to beat on its own very often (4 out of every 5 heartbeats is prompted by the pacer). so if it's not firing, this is a major problem, and would possibly (read: probably) require a replacement generator. which means, you'll note... surgery.
2. scar tissue in his pulmonary veins. you might recall that in may 2008, asher had patches put in the veins which bring blood from the right lung to the heart, because they were too small. you may also be aware of asher's love of scar tissue. yup, this kid of mine loves to put scar tissue - and lots of it! - on anything put in there by someone other than God. which is a lot. so, my thought is that asher has a lot of scar tissue built up around those patches, and that's blocking the blood from returning from his right lung. this would cause the pressure in his right lung to increase to an alarming degree, and since blood cannot get to his heart, it cannot get out to his body, which then causes dizziness, light-headedness and fainting, especially during periods of activity when the body requires more blood, not less. if this is the case, it will require some sort of surgical intervention to treat it.
3. the arch. we have known about the abundance of scar tissue in asher's aortic arch for over two years now. but because of the nature of the surgery, they didn't want to intervene unless/until it was causing symptoms. (if there's no symptoms, it means it isn't having an effect on the body. once symptoms appear, the narrow arch is now affecting function and blood flow and all that.) interestingly, when i mentioned asher's BPs to our nephrologist the other day, the first thing out of his mouth was, "is his arch narrowing?" {wave of nausea}if the arch is narrowing further, it will mess up his blood pressure and decrease blood flow out of the heart, which will cause dizziness, light-headedness and fainting. if the problem is the arch, they will have to operate and soon, and that surgery is horrific.

right now, i'm hoping for a simple pacemaker malfunction. but honestly, my money is on the arch.

so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.

so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.

funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).

Wait patiently for the Lord.
    Be brave and courageous.
    Yes, wait patiently for the Lord.
                                 Psalm 27:14

downer alert: it's late, i'm tired, and asher is just so very skinny. :(

on tuesday, asher goes in to paeds for his monthly weight check, and this time, i'm not expecting a gain.

in fact, i'm anticipating a loss.

asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.

today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).

but today, when he was having his bath... i could count his ribs. and he's got an outtie again.

fyi, asher doesn't usually have an outtie. except when he's skinny skinny.

i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"

but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.

it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.

with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.

and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).

i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.

and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.

so far, racing works. but other than that... nothing. even bribery doesn't work.

this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.

i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.

in case you're wondering...

heart life is hard sometimes.

really hard.