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.
Friday, December 2, 2011
Tuesday, November 8, 2011
i heart our respirologist.
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.
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.
Monday, October 24, 2011
Asher requested this specifically
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!
and, of course, once i found a clip of the song performed on The Muppet Show, i had to post that one. ;)
enjoy!
Wednesday, October 19, 2011
WOW!!! has it really been 2 months since i last posted?! CRAZY!!!!!
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.
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.
Friday, August 19, 2011
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.
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.
Monday, August 8, 2011
wow, where do i even start?!
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!!
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
suckerspoor sapswalking popsiclesgentle 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.
Wednesday, August 3, 2011
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!!!!
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!!!!
Tuesday, July 12, 2011
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."
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...
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.
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.
Monday, June 27, 2011
well, our streak has come to an end... but now we get to start over! tomorrow is Day 1. ;)
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}
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}
Tuesday, June 21, 2011
sometimes you just gotta shake your head, shrug and say, "whatever!"
... 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:
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.
Monday, June 20, 2011
don't know why it's taken so long to update here...
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.
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.
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:
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.
 |
| 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.
and lately, he's his usual spunky self. so i'm not worried.
Tuesday, June 14, 2011
blogger asher!! :)
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Friday, June 10, 2011
in his own words...
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Wednesday, June 1, 2011
sorry for the absence...
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.
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.
Wednesday, May 18, 2011
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
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.
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 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.
Monday, May 16, 2011
i heart laundry.
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.
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.
Friday, May 6, 2011
my littlest man is an artist!!!!
(and just ignore the mess behind it...)
Wednesday, May 4, 2011
sshhh... don't tell Murphy, but...
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
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
Wednesday, April 13, 2011
so much sweetness
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.
Thursday, April 7, 2011
well, what do you know...
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,
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.
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!
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!
Wednesday, March 30, 2011
well, it was a day...
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...
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