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.
Showing posts with label other SN kids. Show all posts
Showing posts with label other SN kids. Show all posts
Tuesday, November 8, 2011
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.
Monday, March 14, 2011
sigh...
a little bit about asher first, then moving on to bigger, more important things...
asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?
he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"
"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."
"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)
so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.
dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.
one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.
but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!
so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.
Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:
i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.
asher's amazing paeds dr b talked to dr caldarone the other day. she asked him whether or not asher's chest pains could, in fact, be growing pains. dr b figures, he put all that stuff in there, so he should know, right?
he said, "have they looked into the possibility of ischemia (lack of blood/oxygen to the heart muscle)?"
"they checked his CAs in an echo, but that only shows the beginning of the vessels, so it's not conclusive. and since these pains only happen when he's active, it's got me wondering... but doc said they can't do a stess test on a 4-year old..."
"but they can do a stress echo. that's easy to do." (a stress echo is where they give the patient a dose of dobutamine to increase the heart rate, replicating the cardiac effects of exercise, and they do the echo/US to see how the heart functions under stress.)
so dr b is going to be speaking with london and yes, dropping names (she asked dr c, "can i tell them i talked to you?" and he was cool with that) and asking about a stress echo. from what i have seen of london, i don't think they like to do DSEs (dobutamine stress echo), but i could be wrong, but we may be facing a trip to toronto's clinic.
dr caldarone pointed about that it is not uncommon for fontans to develop ischemia, which is why it came to his mind right away and he is concerned. ischemia can be asymptomatic (no symptoms), or it can lead to things like chest pains and heart attacks and all kinds of things.
one more quick thing about asher: i will be taking him in for another session of play therapy this week. since he was taken to emerg from school the other week, he has regressed in a few ways and has decided that he just wants to be a little boy forever because he's scared of growing up. just a month ago he was all about being a big boy, but now... not so much. i'm just waiting for an appointment time.
but in happy asher news, he is now working on potty training. he's actually out of diapers now. (ok, it all started because i ran out of diapers and only noticed right at bedtime one night, and since i refuse to take the kids to the store at 8:30 at night, we had to make do.) but he's been in underwear for a little over a week now, and he's doing great!!! he's dry overnight, and he's usually dry all day, with only a few accidents all week. he's actually becoming quite proud of himself!!!
so now that you're caught up on asher, we're switching gears a bit to something far more urgent and important.
Asher's favourite "best," his friend B, is back in hospital. asher and i met B and her mom in hospital last spring, and we have become very close. B is not a heart kid, but is extremely complex and fragile. and this admission... yeah. it's bad. terrifying. i cry whenever i think about what's going on, actually. here is the latest, from her mom's FB status:
if you're interested in reading more, to better understand what is going on, please check out her blog. this is a terrifying admission. right now, Brigid needs all the prayers she can get, as do Allison and the rest of the family, not to mention the docs who are trying to figure out what's going on so they can treat her, and the nurses who are caring for her. please please please pray, send vibes, cross crossables... whatever it is you do, please do it. and please spread the word. this is a wonderful family, a dear friend of mine, a beautiful little girl who is asher's "best," and this is absolutely heartbreaking and terrifying. please pray, spread the word, add them to your prayer lists, your church's prayer chain. thank-you.
i'll try to keep you posted on B. suffice it to say, this illness is not getting better yet. she needs a miracle. thank-you.
Sunday, May 16, 2010
please pray
hey folks! just a quick post tonight... and it's not about asher, because he's fine. he's got a cold, but he'll get over it. no worries. anyway....
i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...
allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...
just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3
i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...
allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...
just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3
Thursday, April 29, 2010
in answer to my question from the other day... this might be as close to "normal" as we get around here... but i'll still take it.
ah, normal... and not even "asher normal" anymore...
or as it turns out, a new "asher normal," but one that is probably as close to the real thing as we're gonna get. here's the low-down:
asher has a pacemaker. i know, i know, i'm master of the obvious. but what i had forgotten about was
asher is obsessed with thomas.
you know, the trains
with magnets
that are strong
that he holds in his hands
all the time
often less than 6 inches from his new gadget. ("go go, gadget heart!" haha, sorry, couldn't resist.)
see where i'm going with this? yeah, it's freaking me out a bit. ok, not "freaking me out," per se. more like... concerning me somewhat. see, magnets are not exactly the best thing for the pacemaker. you should see the booklet i got about what he can and cannot go near. (alas, he cannot play with chain saws or jumper cables, but it is safe for him to have a mammogram, so that's a relief. teehee) but it seems that thomas trains were left off the list entirely. and believe you me, i looked. several times. and they aren't mentioned. not even "magnetic toys." sooo... given that asher loves them so much (especially Percy. dear me, he's obsessed!! just ask dr c.), that he always has at least one in his hand (usually the left, since he's a rightie), that he usually even sleeps with at least one but often more...
is this a problem?
magnets and the like are bad for pacemakers because they can cause the generator to malfunction. that is to say, it will either fire when it doesn't need to, or it won't fire when it needs to. once the magnet or whatever is away from the pacer, it resets itself and goes back to business as usual, but i'm just a little concerned because i know too much and not enough. let me explain.
heart rate changes. it goes down when you rest, and up when you're active. that's the way the heart is designed to work. unless you have a block, as asher does (intermittent AV block, to be specific). when there's a block, the HR doesn't always increase with activity. that's a problem. hence the pacemaker, which keeps asher's heart rate at an acceptable rate. it still doesn't always go up, it is often still at 80, but that's ok (i'm assuming).
now, if the pacemaker malfunctions, it may not tell his heart to beat when it needs to. or it may tell his heart to beat too much. either of these is a wee bit of a problem. oh, sure, it won't likely kill him. we're talking about miniscule amounts of electricity for short periods of time, or a lack thereof. but still! suppose he's sleeping with his beloved percy train/magnet/potential anti-pacing device, and his HR is in the 30s, and the pacer isn't working because of his favourite toy ever?! what then, i ask? what then??
on the other hand, the train magnets might not even be an issue, and this whole rant might be in vain, and i'll feel dumb for even bringing it up and worrying some of my readers (because i know some of you, and you will worry now that you've read this. i wish you wouldn't, but i know you do... mom), so i'm going to be calling london cardio in the morning to find out for sure whether i need to be concerned about this or not. and then, of course, i'll fill you in. because you're dying to know, admit it. ;)
and since asher has to be asher, and he's just not asher with only one thing to mention in a post,
asher had a blue spell this week. (margaret, stop reading for a second.) ok, actually, he's had a few. (ok, you can start reading again.) nothing major, just navy blue mouth and nose. but he wasn't distressed at the time, and he pinked back up after a couple minutes, for the most part. but the first time he did it, he was sitting at the table eating some yogurt (fat-free, of course) and he just... turned blue. and then... turned pink again. but nothing else changed, just his colour. no shortness of breath, no dizziness, no sweating, just happy little asher enjoying his snack. so i called our paeds and mentioned it to her (emphasizing, of course, that the blue was his only symptom and please please please don't send us to london over something like this but really i thought the blue spells were supposed to stop after the fontan and yet here he is turning blue for no apparent reason what's up with that???). and of course, being the good doc she is, she called cardio. in toronto. london would probably just blame it on the lighting and how i don't know asher's colour. (oops, did i type that out loud? sorry about that.) so apparently, dr r, my fave cardio, responded with, "no, i don't think it's something to worry about. we never really figured out why he was having blue spells before, actually, so i don't think this is anything to worry about."
i love her.
even though i know some of you are now wondering why it wouldn't worry them that he's still turning blue and they never figured out why this was happening even before the fontan. it just means that it (likely) isn't related to function, so they're not worried.
and therefore, neither am i. which makes me happy. and a little nauseous, but amusedly so, since a blue spell they can't explain isn't worrisome. see what i mean when i refer to "asher normal"?
and one more little asher tidbit. he's skinny. oh, sure, i know he was never the biggest kid out there to start with. he's only in the 25 percentile for height and weight. but this fat-free diet bothers me. (don't read the rest of this paragraph, rachel.) he's so skinny now. i mean, really skinny. i was dressing him today and i took a good look at him, and i wanted to cry. he is pretty much just skin and bones anymore. i can literally count his ribs. i can trace the outline of his pacemaker. he has legs like bram, for crying out loud!! (bram's a stick, for readers who have never met him.) his arms look awful, his knees are knobby and weird-looking... you get the idea. he looks awful! he used to be my little tank. short, yes, but brawny and barrel-chested and strong. now i'm reminded of when he was labelled FTT after he got his GJ-tube. it just makes me so sad to see him like this. i want so badly to just start giving him fatty food again, to help him gain weight again and get back to being my chubby little heart kid. but i can't, because of the chylo. which sucks. and we still have a week of this diet! it's awful!
but for now, i'll just breathe and remember that this, too, shall pass, and that he's made it through so much worse. but every mom knows how disheartening it is to see her precious baby lose weight to this degree. or maybe you don't. and that's a good thing. enjoy. :) so i'm breathing, and this, too, shall pass.
(ok, rachel, you can start reading again.)
in other news...
or as it turns out, a new "asher normal," but one that is probably as close to the real thing as we're gonna get. here's the low-down:
asher has a pacemaker. i know, i know, i'm master of the obvious. but what i had forgotten about was
asher is obsessed with thomas.
you know, the trains
with magnets
that are strong
that he holds in his hands
all the time
often less than 6 inches from his new gadget. ("go go, gadget heart!" haha, sorry, couldn't resist.)
see where i'm going with this? yeah, it's freaking me out a bit. ok, not "freaking me out," per se. more like... concerning me somewhat. see, magnets are not exactly the best thing for the pacemaker. you should see the booklet i got about what he can and cannot go near. (alas, he cannot play with chain saws or jumper cables, but it is safe for him to have a mammogram, so that's a relief. teehee) but it seems that thomas trains were left off the list entirely. and believe you me, i looked. several times. and they aren't mentioned. not even "magnetic toys." sooo... given that asher loves them so much (especially Percy. dear me, he's obsessed!! just ask dr c.), that he always has at least one in his hand (usually the left, since he's a rightie), that he usually even sleeps with at least one but often more...
is this a problem?
magnets and the like are bad for pacemakers because they can cause the generator to malfunction. that is to say, it will either fire when it doesn't need to, or it won't fire when it needs to. once the magnet or whatever is away from the pacer, it resets itself and goes back to business as usual, but i'm just a little concerned because i know too much and not enough. let me explain.
heart rate changes. it goes down when you rest, and up when you're active. that's the way the heart is designed to work. unless you have a block, as asher does (intermittent AV block, to be specific). when there's a block, the HR doesn't always increase with activity. that's a problem. hence the pacemaker, which keeps asher's heart rate at an acceptable rate. it still doesn't always go up, it is often still at 80, but that's ok (i'm assuming).
now, if the pacemaker malfunctions, it may not tell his heart to beat when it needs to. or it may tell his heart to beat too much. either of these is a wee bit of a problem. oh, sure, it won't likely kill him. we're talking about miniscule amounts of electricity for short periods of time, or a lack thereof. but still! suppose he's sleeping with his beloved percy train/magnet/potential anti-pacing device, and his HR is in the 30s, and the pacer isn't working because of his favourite toy ever?! what then, i ask? what then??
on the other hand, the train magnets might not even be an issue, and this whole rant might be in vain, and i'll feel dumb for even bringing it up and worrying some of my readers (because i know some of you, and you will worry now that you've read this. i wish you wouldn't, but i know you do... mom), so i'm going to be calling london cardio in the morning to find out for sure whether i need to be concerned about this or not. and then, of course, i'll fill you in. because you're dying to know, admit it. ;)
and since asher has to be asher, and he's just not asher with only one thing to mention in a post,
asher had a blue spell this week. (margaret, stop reading for a second.) ok, actually, he's had a few. (ok, you can start reading again.) nothing major, just navy blue mouth and nose. but he wasn't distressed at the time, and he pinked back up after a couple minutes, for the most part. but the first time he did it, he was sitting at the table eating some yogurt (fat-free, of course) and he just... turned blue. and then... turned pink again. but nothing else changed, just his colour. no shortness of breath, no dizziness, no sweating, just happy little asher enjoying his snack. so i called our paeds and mentioned it to her (emphasizing, of course, that the blue was his only symptom and please please please don't send us to london over something like this but really i thought the blue spells were supposed to stop after the fontan and yet here he is turning blue for no apparent reason what's up with that???). and of course, being the good doc she is, she called cardio. in toronto. london would probably just blame it on the lighting and how i don't know asher's colour. (oops, did i type that out loud? sorry about that.) so apparently, dr r, my fave cardio, responded with, "no, i don't think it's something to worry about. we never really figured out why he was having blue spells before, actually, so i don't think this is anything to worry about."
i love her.
even though i know some of you are now wondering why it wouldn't worry them that he's still turning blue and they never figured out why this was happening even before the fontan. it just means that it (likely) isn't related to function, so they're not worried.
and therefore, neither am i. which makes me happy. and a little nauseous, but amusedly so, since a blue spell they can't explain isn't worrisome. see what i mean when i refer to "asher normal"?
and one more little asher tidbit. he's skinny. oh, sure, i know he was never the biggest kid out there to start with. he's only in the 25 percentile for height and weight. but this fat-free diet bothers me. (don't read the rest of this paragraph, rachel.) he's so skinny now. i mean, really skinny. i was dressing him today and i took a good look at him, and i wanted to cry. he is pretty much just skin and bones anymore. i can literally count his ribs. i can trace the outline of his pacemaker. he has legs like bram, for crying out loud!! (bram's a stick, for readers who have never met him.) his arms look awful, his knees are knobby and weird-looking... you get the idea. he looks awful! he used to be my little tank. short, yes, but brawny and barrel-chested and strong. now i'm reminded of when he was labelled FTT after he got his GJ-tube. it just makes me so sad to see him like this. i want so badly to just start giving him fatty food again, to help him gain weight again and get back to being my chubby little heart kid. but i can't, because of the chylo. which sucks. and we still have a week of this diet! it's awful!
but for now, i'll just breathe and remember that this, too, shall pass, and that he's made it through so much worse. but every mom knows how disheartening it is to see her precious baby lose weight to this degree. or maybe you don't. and that's a good thing. enjoy. :) so i'm breathing, and this, too, shall pass.
(ok, rachel, you can start reading again.)
in other news...
- ethan is still at sick kids. i talked to his momma today, and they still don't know fully what's going on with him. they're still not treating the bacteria in his lungs because he isn't symptomatic enough, apparently, and they want to send him home soon. needless to say, mom is not on board with this idea. especially since they want him to go home on daily antibiotic prophylaxis through his PICC line, which she would have to do, and she will have to suction him before every meal (they suspect he aspirates). and keep in mind, she'd have to pay for the suction machine. and keep in mind, she has six other kids. and keep in mind, she's exhausted and stressed out and very concerned about her baby. so please hold them in the Light right now. she is beside herself lately, not knowing what to do and having some trouble coping a bit, and her sweet little baby (who is absolutely adorable, by the way) doesn't seem to be getting better, only sicker. so they really need prayer.
- mia is now home. you'll recall that mia is the 7-year-old who was in an accident and had to have some hefty reconstructive surgery done earlier this month. well! they sent her home. she's not 100% yet and faces a long road to recovery, but going home is definitely a step in the right direction, so please continue to pray/etc for mia and her momma mary and their family.
- taylor is either home or going home in the next couple days. he is the little boy who weighed 13 lbs at 16 months of age. yeah. home. i'm sure sure what's going on with him, but i know they're out of sick kids.
- little hannah was transfered to london this week for the rest of her post-op treatment. this is bittersweet: on the one hand, london can handle everything from here on out, and this brings them much closer to home (i'm thinking of going up to visit them tomorrow, actually), but mom rachel was very opposed to the transfer, understandably feeling much more comfortable in toronto. the other issue with hannah now is that she also has chylothorax (hence the "don't read this, rachel" comments), and doesn't seem to be tolerating her new formula. she now has an NG-tube, which mom is becoming a pro at inserting (i've done it, it's not fun, but we gotta do what we gotta do, sadly), so that may help somewhat with the formula intake. i'll post more about hannah when i know. but in the meantime, please pray for them, as well.
- please pray for my friend sue's baby, levi. he has a rare condition which requires meticulous care, lots of appointments, and even more bloodwork. it's very stressful, especially given the nature of the condition, which is scary. he is only a couple months old, but has already spent too much time in hospitals, especially in critial care units. please hold them in the Light. i'll update you periodically on levi's progress, too.
- hunter, one of asher's single ventricle cohorts, is going in tomorrow for his fenestration closure. this is done in the cath lab, and they close the hole in the fontan. they will also be checking out function and his narrow jugular, but no one expects there to be issues with those. but still, it's nerve-wracking, so please pray for hunter (and mom, drea) tomorrow.
Sunday, April 18, 2010
yes, i know, it's been a few days...
... but other than wendy's post the other day, there hasn't been much to report.
asher's infection seems to be responding to the vanco (they stopped the gent a couple days ago, thinking it was overkill). the redness is almost gone now, so that's good news. but they've already had to save his IV a couple times, and the dose this morning was likely the last for this line. he'll likely be getting a new line this afternoon. i just hope they don't take him to the treatment room for that. he's terrified of that room, and personally, i think he's suffered enough already.
by tomorrow morning, they'll have the results from his blood culture, so they'll make a decision then about the vanco. please pray etc that they can switch him to a different med for the duration of the course.
asher's drainage has slowed significantly, as well. on friday afternoon, dr c popped in to check on asher. the drain had been off suction since the night before, and was still draining quite a bit (25 ml in overnight). so he ordered it back on suction, then clamp it for a few hours. this would basically trick the body into thinking the tube was gone, so we could see what would happen if they did, indeed, pull it. after a few hours clamped, open it back up and see what happens (they were looking for respiratory distress, fyi). if worse comes to worse, they'd do a chest x-ray overnight to see what's up. so we did that, and when the clamp came off... he drained almost 30 ml (an ounce, for my non-metric readers) in 20 mins. yeah. so the tube stayed in, with suction.
but...
the resident came in last night to talk to me, because she is super keen to pull the drain. i said, "are you freaking kidding me???" (not my exact words, but i thought it! LOL). i said that since our previous admission was because of pleural effusion, i'd rather the drain stay in one more day. "well," she said in a tone that showed clearly that she has no idea who she's talking to, "any time you have something from outside going into the body" (note the terms she uses. yeah, clueless.) "there's a chance that --" "yes, i know there's a risk of infection. but right now he's covered by vanco, which is pretty heavy-duty, so if we leave it for one more day, it won't be a huge problem. besides, if you pull the tube, send us home, and he's re-admitted for effusion again he won't be covered by the vanco and he'll be susceptible to another bug, and given that he's immunocompromised, i'd prefer to leave the tube where it is for now and re-assess in the morning." she relented.
but they're pulling it today. and (i think) i'm ok with that.
as for me... well, this week, i wasn't doing so well, myself. i am exhausted in so many ways, completely drained. in fact, one person described me as looking "deflated." i told her i felt like i'd had the crap kicked out of me for the last 6 weeks, and she said - get this! - "well, you have." nice. so... last night i came to hamilton for the night. i got to spend some time with the kidley-winks (we played snakes & ladders - wow, i'd forgotten how fun that game can be!) and had burgers, and i got some much needed sleep, some restful sleep... and it was lovely. today i feel much better, and ready to face whatever crap gets thrown my way.
thanks for all the prayers/vibes/crossed crossables. we really appreciate them. please continue to do whatever it is you do, because we're not done yet. and please remember all the other kidlets out there, including Hannah (with TGA) who had her switch done on friday and is in the unit, and taylor who has a rare syndrome which includes cranial issues, feeding issues, and heart issues, and Mia who is 7 years old and was in a horrific car accident last weekend, and will require extensive plastic surgery to reconstruct her face and limbs (her mother was asked to bring in a picture so they would know what to do). ethan is still here, but out and about a bit, and there's a code blue plan in place for his mom Shawna (who has CHD and a history of strokes). so there's quite a few people to pray for, but we all need it. thanks so much. :)
asher's infection seems to be responding to the vanco (they stopped the gent a couple days ago, thinking it was overkill). the redness is almost gone now, so that's good news. but they've already had to save his IV a couple times, and the dose this morning was likely the last for this line. he'll likely be getting a new line this afternoon. i just hope they don't take him to the treatment room for that. he's terrified of that room, and personally, i think he's suffered enough already.
by tomorrow morning, they'll have the results from his blood culture, so they'll make a decision then about the vanco. please pray etc that they can switch him to a different med for the duration of the course.
asher's drainage has slowed significantly, as well. on friday afternoon, dr c popped in to check on asher. the drain had been off suction since the night before, and was still draining quite a bit (25 ml in overnight). so he ordered it back on suction, then clamp it for a few hours. this would basically trick the body into thinking the tube was gone, so we could see what would happen if they did, indeed, pull it. after a few hours clamped, open it back up and see what happens (they were looking for respiratory distress, fyi). if worse comes to worse, they'd do a chest x-ray overnight to see what's up. so we did that, and when the clamp came off... he drained almost 30 ml (an ounce, for my non-metric readers) in 20 mins. yeah. so the tube stayed in, with suction.
but...
the resident came in last night to talk to me, because she is super keen to pull the drain. i said, "are you freaking kidding me???" (not my exact words, but i thought it! LOL). i said that since our previous admission was because of pleural effusion, i'd rather the drain stay in one more day. "well," she said in a tone that showed clearly that she has no idea who she's talking to, "any time you have something from outside going into the body" (note the terms she uses. yeah, clueless.) "there's a chance that --" "yes, i know there's a risk of infection. but right now he's covered by vanco, which is pretty heavy-duty, so if we leave it for one more day, it won't be a huge problem. besides, if you pull the tube, send us home, and he's re-admitted for effusion again he won't be covered by the vanco and he'll be susceptible to another bug, and given that he's immunocompromised, i'd prefer to leave the tube where it is for now and re-assess in the morning." she relented.
but they're pulling it today. and (i think) i'm ok with that.
as for me... well, this week, i wasn't doing so well, myself. i am exhausted in so many ways, completely drained. in fact, one person described me as looking "deflated." i told her i felt like i'd had the crap kicked out of me for the last 6 weeks, and she said - get this! - "well, you have." nice. so... last night i came to hamilton for the night. i got to spend some time with the kidley-winks (we played snakes & ladders - wow, i'd forgotten how fun that game can be!) and had burgers, and i got some much needed sleep, some restful sleep... and it was lovely. today i feel much better, and ready to face whatever crap gets thrown my way.
thanks for all the prayers/vibes/crossed crossables. we really appreciate them. please continue to do whatever it is you do, because we're not done yet. and please remember all the other kidlets out there, including Hannah (with TGA) who had her switch done on friday and is in the unit, and taylor who has a rare syndrome which includes cranial issues, feeding issues, and heart issues, and Mia who is 7 years old and was in a horrific car accident last weekend, and will require extensive plastic surgery to reconstruct her face and limbs (her mother was asked to bring in a picture so they would know what to do). ethan is still here, but out and about a bit, and there's a code blue plan in place for his mom Shawna (who has CHD and a history of strokes). so there's quite a few people to pray for, but we all need it. thanks so much. :)
Wednesday, April 14, 2010
hey, margaret! his sats and HR match!!!! (in the good way!!!!)
what a difference an afternoon makes!
asher went in for his surgery yesterday at 3:00. at about 6:30, dr c came out and gave me the good news, that asher did well, and the pacemaker is in and working. how do you spell relief? P-A-C-E-M-A-K-E-R-!
the pacer is set to kick in when asher's HR dips below 80, and yeah, it's working right now. but it makes the ECG line on the monitor look interesting. there is now a white spike where the P-wave should be, at the right distance from the QRS line... oh, dear, i know too much about this stuff now. sigh...
asher looks great now, all things considered. he is pale, but it's pale pink now, not grey. and his eyes are puffy, but a couple doses of lasix should clear that up pretty quickly. he isn't draining much, either, and the plan is to remove the drain tomorrow. asher is also in quite a bit of pain. his voice is quiet and he doesn't move much, but we're giving him morphine as needed, so that should help. but he's asking for lunch, and this morning he asked, "mommy, i want go playroom. but not right now. later. after lunch." so this is progress. he knows he's not up for it right now, but he knows he will be once he eats. so that's delightful to see.
he'll be getting a holter today, which is standard procedure after a pacemaker, just to make sure everything is firing the way it should. here's hoping it will be our last holter for a very long time (this will be our 4th in about 3 weeks).
and in case you're wondering about me....
last night i wasn't doing so well. i started down a slippery slope of anxiety again, and i don't want to go back to that, thank-you very much. so i drank some water and went to bed... and didn't wake up till about 9:00 this morning. i'm still tired, but my brain is working the way it's supposed to and i'm feeling better. the exhaustion is only physical right now, and i can deal with that.
in other news...
i've been asking for prayers for several kids lately. today i need to add a couple more.
asher went in for his surgery yesterday at 3:00. at about 6:30, dr c came out and gave me the good news, that asher did well, and the pacemaker is in and working. how do you spell relief? P-A-C-E-M-A-K-E-R-!
the pacer is set to kick in when asher's HR dips below 80, and yeah, it's working right now. but it makes the ECG line on the monitor look interesting. there is now a white spike where the P-wave should be, at the right distance from the QRS line... oh, dear, i know too much about this stuff now. sigh...
asher looks great now, all things considered. he is pale, but it's pale pink now, not grey. and his eyes are puffy, but a couple doses of lasix should clear that up pretty quickly. he isn't draining much, either, and the plan is to remove the drain tomorrow. asher is also in quite a bit of pain. his voice is quiet and he doesn't move much, but we're giving him morphine as needed, so that should help. but he's asking for lunch, and this morning he asked, "mommy, i want go playroom. but not right now. later. after lunch." so this is progress. he knows he's not up for it right now, but he knows he will be once he eats. so that's delightful to see.
he'll be getting a holter today, which is standard procedure after a pacemaker, just to make sure everything is firing the way it should. here's hoping it will be our last holter for a very long time (this will be our 4th in about 3 weeks).
and in case you're wondering about me....
last night i wasn't doing so well. i started down a slippery slope of anxiety again, and i don't want to go back to that, thank-you very much. so i drank some water and went to bed... and didn't wake up till about 9:00 this morning. i'm still tired, but my brain is working the way it's supposed to and i'm feeling better. the exhaustion is only physical right now, and i can deal with that.
in other news...
i've been asking for prayers for several kids lately. today i need to add a couple more.
- a little girl (i don't know her name, but she's 7) was in a head-on collision on friday. please pray for her and her mom.
- a little boy, Jack, who had a heart transplant and is now battling cancer.
- another wee babe, who is 16-months but weighs only 13 lbs. a bunch of us moms were talking with her this morning, and giving her all kinds of questions to ask the docs. has he had a sweat chloride test? screening for chromosomal anomolies? have they checked his heart? what about a GJ-tube (since he's vomitting formula after being without food for 18 hours)? she made a list, and she'll be asking, so i'll try to keep you posted.
- please remember allison and brigid, shawna and ethan, allyson and ethan (VSD closure), stephanie and mason.
- a mom i know from SickKids, who has been part of asher's team over the years, just had her first baby 11 days ago. he's here, too. i don't know any details, but Someone does, so please hold them in the Light, too. she looks tired and stressed and scared. she described it as "a rough 11 days."
Tuesday, April 13, 2010
in a few short hours, asher will be a robot, "but not a big robot. i be a little robot."
asher is scheduled to go in for his pacemaker at 2:00 today.
yesterday, when i was talking to deirdre (thank-you for the wonderful lunch, by the way... it really was lovely and energizing and delightful, for so many reasons), she asked how i was feeling going into this surgery. i told her honestly that i have never, in asher's life, been so excited going into a surgery.
and then last night, they took asher into the treatment room (where he has never been) and put in the IV. he screamed and screamed and screamed and fought and screamed... and all i could do was give him kisses... and pin him down on the table. it was awful. completely heartbreaking, to know that he is so scared, and that he has to suffer this much, and that it never ends...
and now today, i am exhausted. i can't wait for this surgery to be finished. i can't wait to see him afterward. and i can't wait to go home. this is our third admission in less than 6 weeks, this is already the longest admission, and we're not done yet. this is his second heart surgery in a little over a month.
so i'm done. i have nothing left, i just want to cry, and sleep, and hold my pink baby (not a grey one, thank-you very much, just a pink one), and cry some more, and sleep a bit longer, and cry some more, and not be in a hospital, and cry a little bit more (once i've rehydrated), and sleep in a comfy bed, and cry all night, and then just sit and stare at my beautiful orange walls, and cook in my own kitchen, and laugh at bram's quirkiness, and play with blithe and her barbies, and cry some more, and cuddle all three of them to sleep, and wake up surrounded by my kids, and cry a bit more, and make breakfast for all of us, and do some laundry and dishes and tidying and yardwork and pet smokey, and cry a bit more. i miss all of that (ok, maybe not the dishes, but everything else i genuinely miss). i want it back. i'm just so tired of all of this. i know we only have a few days left for this admission, but then what? this life never stops. it's always appointments, trips to emerg, paeds appointments, watching for colour and symptoms, and holding my breath and waiting... for... something. i don't even know what i'm waiting for, but i feel like i'm just waiting for something to go wrong now. and i'm too tired to do it anymore.
and yet i have to. i have to keep going. i have to comfort asher, play with him, help him to be brave, help him laugh and smile and giggle and play and live. and i don't mind any of that. i love it, i really do. and i honestly wouldn't trade a second of this life if i had the chance... but it hurts to know that this kind of life exists, where predictability and stability and simplicity are just dreams that a mother dreams and nothing more...
right now, this is just too hard. i'm too tired, too drained, too weak, too heartbroken, too spent.
and all that being said...
please continue to remember brigid and allison in london. a long, scary admission, and allison is tired.
little ethan (VSD closure) is going home today! his mom is nervous, but this is exciting for them. the last drain is coming out and they're outta here! so enjoy, my friends, you've earned it.
and another little guy to hold in the Light. his name is also ethan. not a heart kid, but his mom is a CHD survivor, which is fantastic to see. ethan is 6 months old, and currently has pneumonia, and after the chest x-ray revealed lesions in his lungs, they did a CT scan, and discovered a tumour in his right lung. it's inoperable, due to its location (right behind his heart) but is potentially blocking his airway. ethan is going in for a PICC line today, because his IV keeps blowing and they have run out of places to try. he's so adorable, all pink and chubby and happy, and honestly, his mom is one strong woman. heart survivor, and ethan is the youngest of her seven (yes, you read that right, seven!) kids. please pray/cross your crossables/send good vibes their way. ethan will be going in for more tests in the next little while, and mom is scared out of her mind right now.
thanks so much for the prayers and so forth; we all really need them right now. my parents are coming up this afternoon, and bringing the kidley-winks with them, so that will be lovely. after the surgery, asher will be back up on the ward, not the unit, which makes it nice, because we don't have to pack our stuff, and oh, there's a lot of it.
yesterday, when i was talking to deirdre (thank-you for the wonderful lunch, by the way... it really was lovely and energizing and delightful, for so many reasons), she asked how i was feeling going into this surgery. i told her honestly that i have never, in asher's life, been so excited going into a surgery.
and then last night, they took asher into the treatment room (where he has never been) and put in the IV. he screamed and screamed and screamed and fought and screamed... and all i could do was give him kisses... and pin him down on the table. it was awful. completely heartbreaking, to know that he is so scared, and that he has to suffer this much, and that it never ends...
and now today, i am exhausted. i can't wait for this surgery to be finished. i can't wait to see him afterward. and i can't wait to go home. this is our third admission in less than 6 weeks, this is already the longest admission, and we're not done yet. this is his second heart surgery in a little over a month.
so i'm done. i have nothing left, i just want to cry, and sleep, and hold my pink baby (not a grey one, thank-you very much, just a pink one), and cry some more, and sleep a bit longer, and cry some more, and not be in a hospital, and cry a little bit more (once i've rehydrated), and sleep in a comfy bed, and cry all night, and then just sit and stare at my beautiful orange walls, and cook in my own kitchen, and laugh at bram's quirkiness, and play with blithe and her barbies, and cry some more, and cuddle all three of them to sleep, and wake up surrounded by my kids, and cry a bit more, and make breakfast for all of us, and do some laundry and dishes and tidying and yardwork and pet smokey, and cry a bit more. i miss all of that (ok, maybe not the dishes, but everything else i genuinely miss). i want it back. i'm just so tired of all of this. i know we only have a few days left for this admission, but then what? this life never stops. it's always appointments, trips to emerg, paeds appointments, watching for colour and symptoms, and holding my breath and waiting... for... something. i don't even know what i'm waiting for, but i feel like i'm just waiting for something to go wrong now. and i'm too tired to do it anymore.
and yet i have to. i have to keep going. i have to comfort asher, play with him, help him to be brave, help him laugh and smile and giggle and play and live. and i don't mind any of that. i love it, i really do. and i honestly wouldn't trade a second of this life if i had the chance... but it hurts to know that this kind of life exists, where predictability and stability and simplicity are just dreams that a mother dreams and nothing more...
right now, this is just too hard. i'm too tired, too drained, too weak, too heartbroken, too spent.
and all that being said...
please continue to remember brigid and allison in london. a long, scary admission, and allison is tired.
little ethan (VSD closure) is going home today! his mom is nervous, but this is exciting for them. the last drain is coming out and they're outta here! so enjoy, my friends, you've earned it.
and another little guy to hold in the Light. his name is also ethan. not a heart kid, but his mom is a CHD survivor, which is fantastic to see. ethan is 6 months old, and currently has pneumonia, and after the chest x-ray revealed lesions in his lungs, they did a CT scan, and discovered a tumour in his right lung. it's inoperable, due to its location (right behind his heart) but is potentially blocking his airway. ethan is going in for a PICC line today, because his IV keeps blowing and they have run out of places to try. he's so adorable, all pink and chubby and happy, and honestly, his mom is one strong woman. heart survivor, and ethan is the youngest of her seven (yes, you read that right, seven!) kids. please pray/cross your crossables/send good vibes their way. ethan will be going in for more tests in the next little while, and mom is scared out of her mind right now.
thanks so much for the prayers and so forth; we all really need them right now. my parents are coming up this afternoon, and bringing the kidley-winks with them, so that will be lovely. after the surgery, asher will be back up on the ward, not the unit, which makes it nice, because we don't have to pack our stuff, and oh, there's a lot of it.
Saturday, April 3, 2010
the most heartbreaking afternoon... and the most heartwarming afternoon... keep praying
my FB status right now says:
and remember, allison, you and brigid are loved. lots of hugs to you, and i'm here when you need me.
Heather has spent the afternoon watching asher crash. he fell asleep around 3:30, and ever since, his HR has been dipping. and each time, it gets lower. he now gets down to 30 and stays there for several seconds. it's VERY hard to watch, even though i know this is EXACTLY what we need him to do. pray that he keeps doing this, but please make sure you also add that he doesn't code. this is terrifying.meantime, brigid isn't doing so well, either. allison and i both allowed ourselves to cry this afternoon, because we're both in crap positions. funny thing is, we've only known each other for 2 weeks, but we know we'll both be there for each other... because we've both been there, we understand... it's nice to have someone to cry with (and to laugh with... at the same time! LOL)... but seriously, you can't imagine how painful these admissions are for either of us. it's hard to cling to 86% (for her) and 70% (for me) as you see your child in these conditions. but it's what we do. too often. just pray we get to keep clinging to these numbers for a very, very, very long time.
and remember, allison, you and brigid are loved. lots of hugs to you, and i'm here when you need me.
prayer for a friend
hi, everyone!
believe it or not, asher is not the only sick kid in the world. lol so this morning, i'm asking for prayer for another little girl we (asher and i) know.
her name is brigid. i'm not going to go into all her "quirks" (you can check out her blog if you're interested), but suffice it to say, she is a very sick little girl right now. i met and befriended her mother while we shared a room during our london admission last month, and wow! what a family! i swear allison is one of the strongest mothers i have ever met. truly remarkable.
right now brigid is back in hospital with pneumonia and sepsis. in fact, she has several bugs growing right now. this isn't good. asher's had sepsis, so i know exactly how terrifying and brutal and heartbreaking (figuratively and literally) it can be. brigid is going into the OR at 9:00 this morning, but of course, as these kids are wont to do, she has thrown everyone a curveball... her INR won't come down (INR is what they call blood clotting time)... and she's not on bloodthinners. kind of a problem, and this is after several doses of vitamin K (a med that is supposed to promote clotting). they're planning to give her a dose of another med before they go in, so please pray that it works.
but please just pray for brigid and her mother (and the rest of the family, as well, since you're already on your knees). this is a scary time for them, brigid is very sick right now. so please pray that they can get her INR under control, that she'll make it through the procedure uneventfully (they deserve something uneventful), that they'll get rid of the bugs, that allison will have the strength to keep going (these roller coasters are exhausting), that the rest of the family will have peace... and since we know God can and does work miracles, pray for healing. i mean, complete healing. brigid has a very rare, very complex condition... please please pray for them all. and don't forget the docs. they go into paeds because they love kids, and seeing their patients suffer like this is stressful for them, too. so pray for guidance, wisdom, strength, compassion, all that good stuff. thanks so much.
and remember, allison, you are Loved.
believe it or not, asher is not the only sick kid in the world. lol so this morning, i'm asking for prayer for another little girl we (asher and i) know.
her name is brigid. i'm not going to go into all her "quirks" (you can check out her blog if you're interested), but suffice it to say, she is a very sick little girl right now. i met and befriended her mother while we shared a room during our london admission last month, and wow! what a family! i swear allison is one of the strongest mothers i have ever met. truly remarkable.
right now brigid is back in hospital with pneumonia and sepsis. in fact, she has several bugs growing right now. this isn't good. asher's had sepsis, so i know exactly how terrifying and brutal and heartbreaking (figuratively and literally) it can be. brigid is going into the OR at 9:00 this morning, but of course, as these kids are wont to do, she has thrown everyone a curveball... her INR won't come down (INR is what they call blood clotting time)... and she's not on bloodthinners. kind of a problem, and this is after several doses of vitamin K (a med that is supposed to promote clotting). they're planning to give her a dose of another med before they go in, so please pray that it works.
but please just pray for brigid and her mother (and the rest of the family, as well, since you're already on your knees). this is a scary time for them, brigid is very sick right now. so please pray that they can get her INR under control, that she'll make it through the procedure uneventfully (they deserve something uneventful), that they'll get rid of the bugs, that allison will have the strength to keep going (these roller coasters are exhausting), that the rest of the family will have peace... and since we know God can and does work miracles, pray for healing. i mean, complete healing. brigid has a very rare, very complex condition... please please pray for them all. and don't forget the docs. they go into paeds because they love kids, and seeing their patients suffer like this is stressful for them, too. so pray for guidance, wisdom, strength, compassion, all that good stuff. thanks so much.
and remember, allison, you are Loved.
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