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.
Showing posts with label there's a reason i haven't posted much lately. Show all posts
Showing posts with label there's a reason i haven't posted much lately. Show all posts
Wednesday, October 19, 2011
Tuesday, July 12, 2011
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 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.
Saturday, January 22, 2011
k, it's been a while...
yes, yes, it's been a while, and i haven't posted a "real" asher update. so here we go.
a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...
his sats were 92%!!!!
this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...
not so much.
his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.
when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.
the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.
he recovered nicely.
and i discovered something interesting: apparently, since i work at shoppers...
I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!
how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)
but back to asher...
since he had the flu the other week, he... um... yeah... hasn't been great.
in fact, i'm kind of playing chicken with him right now...
for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...), and he's puffy, and well, a little irritable. it's not super bad right now, not quite at the point where i would take him in to be seen... but... i hate to admit this, but... yeah... he's getting there.
it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.
and there's another thing...
i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.
i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.
the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.
i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.
the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.
so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.
i'll try not to go so long between updates from now on.
but since the universe doesn't revolve around asher and the rest of us here...
i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.
a couple of weeks ago, asher was looking "off." he was pale, short of breath, sleeping more than normal... just not his usual self. so i took him to see our wonderful paeds, who checked him out, and...
his sats were 92%!!!!
this time last year, i would have been thrilled (and a little concerned) to see sats like that. but now?? post-fontan? now that all his blood goes to his lungs? um...
not so much.
his heart rate was also over 100. much higher than his norm, since he usually rides his pacemaker and his HR is 80 to 85. so that was concerning.
when she listened to his chest, she thought it sounded pretty nasty. so she sent us down for a chest x-ray, and when we got back up to see her, she had looked at it and she said it looked "yucky." yes, that's a technical medical term which means "not good." by this time, his sats were back up to a nice 96%, so that was better, and she offered to admit him, and it was tempting, but we decided that he would go home and come back to see her the next morning. she also ordered a nasal swab, just to check for viruses etc, and prescribed a dose of Tamiflu for the day, just in case it was the flu.
the next day, she gave the bad news that his swab was indeed positive for the flu, so it was tamiflu for the next 6 days.
he recovered nicely.
and i discovered something interesting: apparently, since i work at shoppers...
I DON'T HAVE TO PAY FOR PRESCRIPTIONS!!!!!!!!!
how awesome is that?!?! especially when you have one child who needs a week of tamiflu (at roughly $5 per pill), and i needed antibiotics and steroids to treat a bad case of strep (yes, my throat closed twice), and bram needed a new ventalin inhaler, some antibiotics and steroids to treat a super-bad asthma attack (an ambulance ride, chest x-ray, lots of steroids, sats at 88-93%, blue lips/eyes/nose/nails, and a ride in a wheelchair - the highlight of the evening for him, especially when he found out that asher has never ridden in a wheelchair!). yup, it's been a medically-eventful month around here, and would have been rather expensive, too, if i didn't work where i do. :)
but back to asher...
since he had the flu the other week, he... um... yeah... hasn't been great.
in fact, i'm kind of playing chicken with him right now...
for the last couple of weeks, he has been very pale, there's been the odd blue spell (as in... ahem... once a day...
it's not the symptoms that are bothering me (entirely). it's the fact that they've continued for so long, without getting better. so expect an update at some point this week about a trip to emerg or clinic.
and there's another thing...
i got a call from the school yesterday, and apparently, there was an incident with one of the EA's (educational assistants). asher has his own EA who is with him all day, but there is another EA who covers her breaks twice a day. and yesterday afternoon, when she came to cover mrs e's break, asher got very upset and refused to go with her. he wanted nothing to do with her. so after some questioning, it turns out that something happened with her in the morning.
i won't go into all the details, but suffice it to say... that EA won't be dealing with asher anymore.
the whole thing was probably nothing, and she didn't intend to do anything. and with asher's increased irritability, it may be exaggerated in his mind. but the fact remains that it was an issue to asher, and it was enough that he got very upset when he saw her.
i discussed all this with the principal, and she will discuss asher's most recent cardiac status with all the EAs on monday and she will speak privately with the EA in question and find out her side. but mrs h (the principal) will make sure she understands that someone else will be covering mrs e's breaks from now on.
the principal also offered to report it to CAS, but i turned that down... initially. but when i questioned asher about the incident when he got home... he said "it's a secret" and initially refused to talk to me about it. frankly, that concerns me, and i'm now thinking of taking her up on her offer to report it. i don't want to put asher through any more, but seriously??? this is a medically fragile child with decreased cardiac stability, and someone who should have known better did something she shouldn't have. and whether it was intentional or not, i don't care. it shouldn't have happened. at all.
so that's the most recent goings-on in asherland. not a super-exciting post, but i thought i should get you all caught up.
i'll try not to go so long between updates from now on.
but since the universe doesn't revolve around asher and the rest of us here...
i'd like to ask you to pray for asher's friend brigid and her mom allison. brigid is in the hospital right now with sepsis, and on top of the usual sepsis issues, she is also struggling with some complications from the treatment. these complications are terrifying, and allison is very shaken by them. i won't go into the details, but it's scary. please please please pray/light a candle/cross your crossables/send good vibes for brigid and allison. they really need them right now. thank-you. and allison and brigid, i'm holding you in the Light, and i love you both very, very much.
Friday, August 6, 2010
no, i hadn't forgotten about you... i just *really* don't want to post about this...
yes, i know, it's been over a week since i last posted here. and i know a lot of you are going to be thinking, "wow, things must be going great in asherland!" sadly... not so much.
after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."
note the word "again." isn't that fantastic.
when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.
and he was dizzy again on saturday.
i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.
then, on saturday morning, he fell down in the driveway.
and hit his head on the ground.
so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.
he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.
the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.
of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.
"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.
"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."
"asher, when you fell down this morning, did everything go black?" "yeah."
does anyone else want to vomit right about now????
so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.
needless to say, they didn't find anything, so they sent us home.
cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.
so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.
in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:
so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.
so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.
funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).
after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."
note the word "again." isn't that fantastic.
when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.
and he was dizzy again on saturday.
i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.
then, on saturday morning, he fell down in the driveway.
and hit his head on the ground.
so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.
he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.
the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.
of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.
"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.
"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."
"asher, when you fell down this morning, did everything go black?" "yeah."
does anyone else want to vomit right about now????
so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.
needless to say, they didn't find anything, so they sent us home.
cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.
so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.
in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:
- pacemaker malfunction. this would be the "simplest." i put that in quotes because if it's malfunctioning, it would not be firing when he needs it to, and i'm sure we all remember that now, asher's heart doesn't like to beat on its own very often (4 out of every 5 heartbeats is prompted by the pacer). so if it's not firing, this is a major problem, and would possibly (read: probably) require a replacement generator. which means, you'll note... surgery.
- scar tissue in his pulmonary veins. you might recall that in may 2008, asher had patches put in the veins which bring blood from the right lung to the heart, because they were too small. you may also be aware of asher's love of scar tissue. yup, this kid of mine loves to put scar tissue - and lots of it! - on anything put in there by someone other than God. which is a lot. so, my thought is that asher has a lot of scar tissue built up around those patches, and that's blocking the blood from returning from his right lung. this would cause the pressure in his right lung to increase to an alarming degree, and since blood cannot get to his heart, it cannot get out to his body, which then causes dizziness, light-headedness and fainting, especially during periods of activity when the body requires more blood, not less. if this is the case, it will require some sort of surgical intervention to treat it.
- the arch. we have known about the abundance of scar tissue in asher's aortic arch for over two years now. but because of the nature of the surgery, they didn't want to intervene unless/until it was causing symptoms. (if there's no symptoms, it means it isn't having an effect on the body. once symptoms appear, the narrow arch is now affecting function and blood flow and all that.) interestingly, when i mentioned asher's BPs to our nephrologist the other day, the first thing out of his mouth was, "is his arch narrowing?" {wave of nausea}if the arch is narrowing further, it will mess up his blood pressure and decrease blood flow out of the heart, which will cause dizziness, light-headedness and fainting. if the problem is the arch, they will have to operate and soon, and that surgery is horrific.
so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.
so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.
funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).
Wait patiently for the Lord.
Be brave and courageous.
Yes, wait patiently for the Lord.
Psalm 27:14
Saturday, March 13, 2010
Holy oxygenation, batman! Look at those sats!! (aka, “holy Speedy Gonzalez, batman! We’re already home!”)
Sorry for the two titles, folks. I (and others) preferred the oxygenation title, but Asher preferred the speedy Gonzalez one. His words: "i love that one, mommy." Sigh. I suppose i should humour him... it is his blog, after all. Anyhoo...
So, we're home!! J
Here's the low-down:
We were discharged from sick kids on Tuesday. The only reason we were in as long as we were (discharge papers word it this way: "Discharge was delayed due to persistent, non-chylous chest tube drainage.") was that pesky tube, but the drainage had slowed enough that they pulled the last drain and sent us home on Tuesday.
Meanwhile, however... wow! Was he ever cranky!! Mind you, i'd be a little ticked, too, if all my ribs were broken and someone had carved me up like a Christmas turkey, so i can't really blame him. But still! I'm not used to this! He's the happiest kid i know! So this was hard to see, but we managed. We stayed overnight in Hamilton with my family. We both wanted to see the other kidley-winks before heading home. So the plan was to come home on Wednesday. But... and yes, there's always a "but" in asherland... he threw a fit and demanded we stay one more night with "blivey and bramby." So i humoured him, and we stayed one more night. But we had post-op clininc at London cardio on Thursday morning, so we absolutely had to leave then. Which we did.
And here's how post-op clinic went:
Registered at 11 and went right in for our echo. I warned the tech (Jamie. Love her. And for those London heart moms out there... check out her ink next time you're there. It's really cool. But i digress...) about the quirk with Asher's fontan. And now, writing that sentence, i realize that i may not have posted about that here. So here you go: Asher had a "fenestrated fontan" which means that they put holes in the new wall which directs bloodflow straight to the lungs. These holes are intended to ease the transition to this new circulation and new pressures. Well! They know they put holes in there... but they can't find them now. Asher has had 3 echos since then, including and trans-esophogeal echo done in the OR, and they cannot find any flow into the right atrium from the IVC. They've looked, and there just isn't any. So i like to refer to this as an "unfenestrated fenestrated fontan"... the one complication from Asher's surgery. Haha so anyway, Jamie looked and looked but couldn't find the fontan. But otherwise, an uneventful echo.
Next up, bloodwork. Which was closed for lunch by the time we hiked all the way up there. Sigh. So, down to the first floor for a chest x-ray. With which our hero was not impressed. But he did well and got some fun stickers out of the deal, so no major complaints.
After that, hike back to clinic, because it's not nearly time for the lab to be open again. But, of course, no one was around in cardio, so we headed back to the PMDU for bloodwork.
Which was awful. They couldn't get in the vein in his one arm, so they switched to the other. Two pokes, plus lots of fiddling around in there to get it into his very scarred vein, and Asher left with a bit less blood, two band-aids, and a great new hot wheels car with a hood and trunk that open. So he was (relatively) happy... and hasn't let go of that car since, by the way.
Back to cardio. ECG went well. Uneventful, in fact. (wow, i love that word!!). his blood pressure is still high (114/65... mine is 110/70. Anyone see a problem there? That's right. My 3-year-old has higher blood pressure than me. Nice). BUT!!!! And make sure you pay attention to this... Asher's sats were... get this...
96%!!!!!!!!!!
Ok, i just realized that not everyone knows what that means or why we care. "sats" show the amount of oxygen that is in the blood. Most of us reading this post have sats in the 98 to 100% range. That's normal. Before surgery, Asher's sats were 78 to 84%. And now they're almost normal!!! Can you believe this?!?! Never thought i'd see the day, but here we are!!!!!
There is another issue remaining, however. Apparently, Asher wasn't done draining. So there is now a pocket of fluid on his right lung. They saw it on the echo and the x-ray. So they're keeping his diurrectic (HCT) at twice daily for now (it was once daily pre-op) and we're going back to clinic for another chest x-ray on Monday. Oh, joy.
So Asher is now on quite the old man cocktail of meds. Three meds for blood pressure (carvedilol, which also helps with rhythm; ramipril, which also helps with function; and HCT, which also helps his kidneys), and one blood thinner (warfarin, which my grandfather was on for years). And he doesn't like any of them. He used to be so good with his meds. Now he not only complains, he turns away with a "hmph!" and says all-too-emphatically, "i don't like you, mommy. I don't want medicine. I don't like you, mommy." Gosh, isn't it swell that he can talk now? (why, oh why can't you hear the sarcasm?!)
But being home has definitely helped his mood. He is now usually happy and chipper and playful, although he still gets cranky and has a wicked short temper, but it's getting better... slowly. But again, i completely understand. In his mind, i didn't protect him from the doctors, i didn't stop them from hurting him, so he's angry. I understand. It doesn't make it any easier to hear/see, but i understand. And the fact that i can't pick him up properly the way he wants me to doesn't help, either. But he likes to cuddle with me and wants me to carry him a lot and chats my ear off, which is nice and makes those cranky moments a little easier to handle.
But there you go. Probably not my best writing, nor my wittiest post, but i'm tired. Maybe when i'm not quite this tired i'll edit/repost. Maybe. But don't count on it. ;)
Wednesday, November 11, 2009
quick update... and i'm gonna sum it all up in one word: ugh.
i haven't posted lately about how asher's doing, so i'm gonna get you all caught up.
a couple weeks ago, asher was admitted in london with the flu. H1N1. yup. delightful, no? but he's better now. a couple days of antibiotics and tamiflu and he's feeling "much better," as he would say.
but...
and of course, you were expecting that word...
since then, he hasn't been doing so well. over the last week or so, he has become increasingly lethargic. he spends a lot of play time now lying on the floor. he still has his bursts of energy, but those periods of lethargy are increasing every day. he's had a few blue spells, and off and on, his hands are very cold. he also seems to have lost a lot of his appetite, and is now refluxing more frequently.
i know it's time for his fontan, but still... the thought of watching him in this condition, with no power to change it, is discouraging. especially since, from a cardiac standpoint, he had been doing so well for so long. but the long string of infections, then the flu... i guess this was bound to happen. knowing that doesn't make it any easier, either. but this is the way things go with asher.
meanwhile, we're counting down to the cath. two weeks today. ugh. for some reason, my stomach knots up when i think about it. i know what they're gonna say, because they already said it all in february. i think that's the worst part. knowing. but so it goes. and as i discussed tonight with a couple friends, i have to remember to surrender this whole situation. it's not mine to control anyway, so why am i trying? a hard lesson to learn, especially when you're a mom. especially when you're a heart mom.
well, i should go now. it's the wee hours, and i'm tired. so i'll ttyl. :)
a couple weeks ago, asher was admitted in london with the flu. H1N1. yup. delightful, no? but he's better now. a couple days of antibiotics and tamiflu and he's feeling "much better," as he would say.
but...
and of course, you were expecting that word...
since then, he hasn't been doing so well. over the last week or so, he has become increasingly lethargic. he spends a lot of play time now lying on the floor. he still has his bursts of energy, but those periods of lethargy are increasing every day. he's had a few blue spells, and off and on, his hands are very cold. he also seems to have lost a lot of his appetite, and is now refluxing more frequently.
i know it's time for his fontan, but still... the thought of watching him in this condition, with no power to change it, is discouraging. especially since, from a cardiac standpoint, he had been doing so well for so long. but the long string of infections, then the flu... i guess this was bound to happen. knowing that doesn't make it any easier, either. but this is the way things go with asher.
meanwhile, we're counting down to the cath. two weeks today. ugh. for some reason, my stomach knots up when i think about it. i know what they're gonna say, because they already said it all in february. i think that's the worst part. knowing. but so it goes. and as i discussed tonight with a couple friends, i have to remember to surrender this whole situation. it's not mine to control anyway, so why am i trying? a hard lesson to learn, especially when you're a mom. especially when you're a heart mom.
well, i should go now. it's the wee hours, and i'm tired. so i'll ttyl. :)
Sunday, September 27, 2009
because it's not enough with asher's stuff...
so much has happened recently around here...
asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.
i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)
on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: http://adhdmomandkid.blogspot.com/ i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)
asher's tube is still (or again) infected, quite badly. doc put him back on clyndamycin for another week. i'm hoping this will clear it up, because he spent wednesday, thursday and part of friday crying because his tube hurt so badly. he hasn't been crying this weekend, so i think it's on the mend.
i'm going to try something new with him once this course of antibiotics is done. i'm going to try giving him some probiotics. he's been on antibiotics since early august, with only a few days here and there without them. and given that, after the staph infection earlier this month, he ended up with a fungal infection in the tube site, i really think this has the potential to help him immensely. (for those who don't live in paeds clinics: antibiotics kill bacteria. that's what they're for. and they do a good job. but the problem is that they kill all the bacteria. our bodies still need some bacteria to keep everything balanced. but when the good bacteria is gone, it disrupts the balance, and things like yeast and fungus can begin to cause problems, which explains why some people struggle with yeast infections while on antibiotics. probiotics help restore the balance to the body, by promoting the growth of "good" bacteria.)
on another non-asher note... blithe was diagnosed earlier this week with ADHD. and, i know this will shock you, so make sure you're sitting before continuing to read this sentence... sitting?... good. i've started a blog. it's called My Girlie & Me, and in it, i'm going to write about how blithe is doing, medical and non-medical ways of dealing with this condition and how blithe is doing with it all, and resources i've found on the subject. feel free to check it out: http://adhdmomandkid.blogspot.com/ i just set it up today, but rest assured there will be more posts coming. (as if there was any doubt about that! LOL)
Thursday, September 17, 2009
now, i know it's been a while, but once you read this post, you'll understand why it's been so long since i updated.
ok, so last time i posted here, asher was getting his g-tube. and that went really well. it was very quick, not quite as traumatic for asher as tube changes usually are, and we were all happy. since then, the tube's been working great, and i'm loving this whole non-gj life.
there's even a bonus i hadn't anticipated! asher gets hungry now! he actually eats at every meal, and actual measurable amounts, no less! and he's loving it! i think he's starting to feel more like an average, normal kid, instead of a SN kid, and that's wonderful! well, except for one minor little problem... ALL HE WANTS TO DO IS EAT!!!!!!! wow, never thought i'd complain about that! lol
and if you're wondering, his favourite foods are chocolate chip cookies, pepperoni pizza, and cheese. specifically, "orange cheese." if it's not orange, he's not interested. lol
as for everything else, well...
as i said in an earlier post, asher's tube site was infected. i took him to emerg on the sunday night a couple weeks ago, and they swabbed it, and the sample grew staph. nice, eh? ugh, that's what happens when you're in the hospital as often as asher is. :( so we were given a script for clyndamycin (aka, Dalacin). but...
and you know there's always a "but" with asher...
the infection didn't clear up. so after five days on clynda, we trekked back to emerg. where they swabbed the site, and they prescribed cipro, but told us to continue the clynda for its full course, because of the staph. but she added, if it got any worse, asher would have to be admitted for IV antibiotics.
so we gave the cipro a whirl. but after a few days of that, the infection just looked worse. and i mean, it was the worst-looking tube infection i've ever seen, and my boy's had some doozies. (remember when he had to be admitted for this very thing? yeah, that was bad. this was worse.) so again, back we went to emerg, with bags packed, ready to be admitted. by now there was an absess-looking-thing on the site, and it was all things nasty infection. blech! all i'd have to do was look at it, and he'd cry. and this after a week and a half of big antibiotics. we saw the doc, who swabbed the site again. apparently, the previous swab hadn't grown anything, but the doc this time was certain it looked like MRSA (drug-resistant staph... not good). so he discontinued the cipro and prescribed... get this... keflex. that's right. the med that has NEVER worked for asher's tube infections. that's what he gave us. and i said to him, "that never works. he's been on it before, many times, and the infections always get worse. it's not going to work." he says, "no, staph responds to keflex. so we're gonna try that." forget that asher has a weak immune system and half a heart and really can't tolerate these kinds of stubborn infections. nope. doesn't matter. we were sent home with a script for keflex.
i was not impressed.
so, the next morning, i called my favourite paediatrician. her advice (and i'm quoting here): "take him right back to emerg right now and demand to see dr s."
well, you know me, i always do as i'm told. ;) so we went back to emerg one last time. where dr k consulted with dr s (infectious disease specialist), who figures that since the last two swabs grew nothing, that the problem is likely no longer bacterial, but rather fungal, and the antibiotics are making it worse.
well, let me just say this: dr s is my favourite person ever now! the med she prescribed worked beautifully - after the first dose, his site was noticeably better, and by the third (and last), it was back to healthy.
you'll notice i wrote "was back to healthy." that's right, past tense. ugh. i changed asher's dressing today, and it was nasty. oozy and red and painful. needless to say, he was not a happy camper. so i took him to dr b today, and she looked at the site, and we left with a prescription for clynda again. so we'll see how this works. cross your crossables. :)
so there you go. several trips to emerg, a couple nasty infections, and charlie is muttering in his sleep right now. lol has nothing to do with asher, but it's cute. lol
there's even a bonus i hadn't anticipated! asher gets hungry now! he actually eats at every meal, and actual measurable amounts, no less! and he's loving it! i think he's starting to feel more like an average, normal kid, instead of a SN kid, and that's wonderful! well, except for one minor little problem... ALL HE WANTS TO DO IS EAT!!!!!!! wow, never thought i'd complain about that! lol
and if you're wondering, his favourite foods are chocolate chip cookies, pepperoni pizza, and cheese. specifically, "orange cheese." if it's not orange, he's not interested. lol
as for everything else, well...
as i said in an earlier post, asher's tube site was infected. i took him to emerg on the sunday night a couple weeks ago, and they swabbed it, and the sample grew staph. nice, eh? ugh, that's what happens when you're in the hospital as often as asher is. :( so we were given a script for clyndamycin (aka, Dalacin). but...
and you know there's always a "but" with asher...
the infection didn't clear up. so after five days on clynda, we trekked back to emerg. where they swabbed the site, and they prescribed cipro, but told us to continue the clynda for its full course, because of the staph. but she added, if it got any worse, asher would have to be admitted for IV antibiotics.
so we gave the cipro a whirl. but after a few days of that, the infection just looked worse. and i mean, it was the worst-looking tube infection i've ever seen, and my boy's had some doozies. (remember when he had to be admitted for this very thing? yeah, that was bad. this was worse.) so again, back we went to emerg, with bags packed, ready to be admitted. by now there was an absess-looking-thing on the site, and it was all things nasty infection. blech! all i'd have to do was look at it, and he'd cry. and this after a week and a half of big antibiotics. we saw the doc, who swabbed the site again. apparently, the previous swab hadn't grown anything, but the doc this time was certain it looked like MRSA (drug-resistant staph... not good). so he discontinued the cipro and prescribed... get this... keflex. that's right. the med that has NEVER worked for asher's tube infections. that's what he gave us. and i said to him, "that never works. he's been on it before, many times, and the infections always get worse. it's not going to work." he says, "no, staph responds to keflex. so we're gonna try that." forget that asher has a weak immune system and half a heart and really can't tolerate these kinds of stubborn infections. nope. doesn't matter. we were sent home with a script for keflex.
i was not impressed.
so, the next morning, i called my favourite paediatrician. her advice (and i'm quoting here): "take him right back to emerg right now and demand to see dr s."
well, you know me, i always do as i'm told. ;) so we went back to emerg one last time. where dr k consulted with dr s (infectious disease specialist), who figures that since the last two swabs grew nothing, that the problem is likely no longer bacterial, but rather fungal, and the antibiotics are making it worse.
well, let me just say this: dr s is my favourite person ever now! the med she prescribed worked beautifully - after the first dose, his site was noticeably better, and by the third (and last), it was back to healthy.
so there you go. several trips to emerg, a couple nasty infections, and charlie is muttering in his sleep right now. lol has nothing to do with asher, but it's cute. lol
Wednesday, April 22, 2009
i'm sure we set a new record today... Fastest Clinic Appointment Ever!!!
ok, i realize i haven't been keeping the blog very up-to-date recently. my bad. but there's a good reason for that. there's been a lot going on. i'll do a quick list, and then tell you about today's visit.
1. we've been going to SickKids every 2 weeks lately for clinic, to see the cardio Dr R, check sats, blood pressure and heart rate, and to up-titrate the carvedilol (beta blocker, used to regulating rhythm).
2. we've been to emerg a total of 4 times in the last 4 weeks: "raging" ear infection, blue spells and sweating and other CHF symptoms, double ear infection, tube infection with puffiness.
3. a trip to the paediatrician (but not our doc... it was a doc who doesn't know me) for a tube infection. he prescribed keflex. which, you'll note, has never worked for asher's tube infections. and this time was no exception, hence the trip to emerg for a tube infection (when we got cipro, which worked, but see #4...)
4. a trip to Interventional Radiology, because the cipro clogged asher's feeding tube. and it was far and away the most traumatic tube replacement we have ever experienced. :(
so that brings you up to monday... now for today's news (and pay attention to the timeline):
4am: heather hits snooze.
4:09 am: heather hits snooze.
4:18 am: heather realizes she has hit snooze twice now, but doesn't remember the first time. lol heather reluctantly hits "alarm off" and stumbles to the shower.
5:09 am: heather (showered, dressed, with some, but not all make-up on yet) and asher (in jammies) pile into the tek and hit the road.
5:13 am: heather is handed her most beauteous mandatory pre-road trip timmies (extra large black, for those who are curious), and hits the road.
6:33 am (believe me, i checked specifically b/c i couldn't believe it!!) heather finds herself in VERY heavy traffic on the 403 by hamilton!! at 6:33AM!!!!! shouldn't people still be in bed at that hour?!?!?!?!?!?!?!?!
7:54 am: heather, asher and tekkie find lovely parking spot on P1 in the sick kids sub-terranean parking lot. all are pleased.
8:45 am: heather and asher register for cardiology clinic.
8:51 am: nurse siobhan calls us in. no weight, b/c ash was weighed in emerg last week (14.0 kg! woohoo!!!!). and the numbers that will only mean something to some of you, but those who understand will want to know:
sats: 79-80% (lower than his usual 85%, but acceptable). HR: 104. BP: 103/60.
8:53 am: dr r enters. everyone discusses asher's numbers, and heather adds that lately his HR hasn't been higher than 125. dr r asks about blue spells, and heather says, "still a few every day. and he's been very blue and irritable since his very traumatic tube change on monday."
8:54 am: heather turns green as a wave of nausea sweeps over her.
oops! sorry, missed one:
8:53:37 am: dr r pauses, then looks at asher and says, "asher, you just like being a mystery, don't you?"
8:55 am: heather asks dr r if the plan is still to do surgery in the next couple of months. dr r answers that, although he 14 kg is a good weight for the surgery, they like to leave kids on the full does of carvedilol for a few months before proceeding. so that would mean another cath in august or september, when they will check the pressures and measurements, and then book surgery based on what they find.
8:55:17 am: not being accustomed to receiving good news from a cardiologist, heather suffers a small stroke. CATH IN AUGUST OR SEPTEMBER!!!!!! WOOOOOOHOOOOOOO!!!!!!!!!!!!!!!!!!
8:55:19 am: heather asks dr r if the plan is still to reconstruct asher's aortic arch a week prior to the Fontan. dr r explains that opinions are divided on that, since the pressures were so high last may, but now seem to be better. so they'll check again in the cath, and decide then.
8:57 am: heather regains consciousness.
8:59 am: heather and asher leave the cardiology clinic, next appointment scheduled for two weeks hence.
9:01 am: heather and asher get back on the elevators and go back up to 4A to get their parking ticket stamped, so as not to pay $30 for parking. $11 is much better.
9:12 am: heather, asher and tekkie pull out of the SickKids subterranean parking lot and out onto elm st and into the sunshine.
there you go. that's our appointment today. short and sweet. just the way i like 'em. :)
Monday, January 19, 2009
VICTORY IS MINE...ish...
for those of you who don't know, asher was admitted to sick kids on friday after his emergency sedate echo. dr russell had ordered it after i called her, and after dr b called her, after some, um, issues with london cardio. what's happened to them there?! asher's own doc doesn't know his diagnosis and doesn't recall meeting us. and then there's the incident with a certain NP all but hanging up on asher's paediatrician with a "it's not cardiac so you're going to have to figure this out without us."
so, asher was admitted on friday for observation. he spent saturday morning sitting calmly in a stroller while i was out (have you ever known asher to sit quietly for a couple hours? no, neither have i. this would be the "lethargy" i'd been talking about). once i got back, we went for a walk on the ward. after less than 10 minutes, asher sat down in the middle of the hall, dark blue, with sats at 59%. he was short of breath, and really didn't have the energy to get back to his room on his own. after a nap (2 hours), he played in the playroom. where his sats were in the 60s. and he kept having blue spells.
the next morning, he walked around his room, and after 5 minutes, he was huffing and puffing like a 50-year-old, 300-lb chain smoker with asthma after shoveling a driveway in february in hamilton. (pretty picture, no? lol) this was mentioned on rounds, and the cardio, after reviewing the episodes from saturday, and getting that report from the nurse, described the symptoms as "very concerning."
asher's issues on sunday weren't so much blue spells or sats (though he sat in the low 70s when awake). no, it was his heart rate and blood pressure. BPs were around 110/70, and his heart rate was all over the place. he sat up after a nap, and that sent his heart rate over 140. his walk to the playroom? yeah. 170. and when he took 10 steps to the shelf and back to the table where he'd been sitting, 155. and desat.
this morning on rounds, dr d thanked me for giving them a puzzle on a monday morning. haha, very funny. but she discussed the whole thing with dr r, and came back with this: asher's not going to have a heart attack in the next couple weeks so he's safe to go home. but his symptoms were serious and concerning and require further investingation. so.....
we came home today. they're doing a cath on the 4th, and they're going to look at pressures all over the place. apparently, the pressures in the PAs, around the glenn, were somewhat high in may, so they're starting there. and given asher's love of scar tissue, they're going to check out the pressures in the PVs. we also came home with a holter.
so, drs r and d discussed asher's case today, and they decided on the cath. but they also sent us home b/c these episodes don't seem to cause him to cause him much distress when they happen, and they don't think he'll have a heart attack in the next couple weeks, so he's safe at home. but you'll notice the short date. nice, eh? ugh.
so, asher was admitted on friday for observation. he spent saturday morning sitting calmly in a stroller while i was out (have you ever known asher to sit quietly for a couple hours? no, neither have i. this would be the "lethargy" i'd been talking about). once i got back, we went for a walk on the ward. after less than 10 minutes, asher sat down in the middle of the hall, dark blue, with sats at 59%. he was short of breath, and really didn't have the energy to get back to his room on his own. after a nap (2 hours), he played in the playroom. where his sats were in the 60s. and he kept having blue spells.
the next morning, he walked around his room, and after 5 minutes, he was huffing and puffing like a 50-year-old, 300-lb chain smoker with asthma after shoveling a driveway in february in hamilton. (pretty picture, no? lol) this was mentioned on rounds, and the cardio, after reviewing the episodes from saturday, and getting that report from the nurse, described the symptoms as "very concerning."
asher's issues on sunday weren't so much blue spells or sats (though he sat in the low 70s when awake). no, it was his heart rate and blood pressure. BPs were around 110/70, and his heart rate was all over the place. he sat up after a nap, and that sent his heart rate over 140. his walk to the playroom? yeah. 170. and when he took 10 steps to the shelf and back to the table where he'd been sitting, 155. and desat.
this morning on rounds, dr d thanked me for giving them a puzzle on a monday morning. haha, very funny. but she discussed the whole thing with dr r, and came back with this: asher's not going to have a heart attack in the next couple weeks so he's safe to go home. but his symptoms were serious and concerning and require further investingation. so.....
we came home today. they're doing a cath on the 4th, and they're going to look at pressures all over the place. apparently, the pressures in the PAs, around the glenn, were somewhat high in may, so they're starting there. and given asher's love of scar tissue, they're going to check out the pressures in the PVs. we also came home with a holter.
so, drs r and d discussed asher's case today, and they decided on the cath. but they also sent us home b/c these episodes don't seem to cause him to cause him much distress when they happen, and they don't think he'll have a heart attack in the next couple weeks, so he's safe at home. but you'll notice the short date. nice, eh? ugh.
Saturday, December 6, 2008
I need to stop typing these up in Word; it’s too easy to go long. But there’s a lot to be said, so settle in.
I realize I haven't been posting here very faithfully over the last few weeks. There's a reason for that. We've been busy. Two birthdays (Asher turned 2 on Tuesday; Bram turned 4 on Friday), Christmas shopping, eating by mouth, fighting CCAC, doctor's appointments, mystery vomiting for, and um... no, I think that's it. Gosh, it felt so much busier than that. Maybe I just have poor time management. (LOL. And arg. This will make sense in a bit, don't worry.)
Let's start with the birthdays and Christmas. Those are fun.
So, it turns out that my 2-year-old boy who loves Thomas and Elmo is the hardest person in the world to shop for. You wouldn't think so, but it's true. Apparently, the only Elmo thing available this year is that stupid Elmo Live thing, which I hate (hence the "stupid" comment). But, we managed. He had a blast and was, predictably, spoiled rotten with gifts. If you haven't seen the pics from his birthday, check them out. I posted the link to this Facebook album in his birthday post, but I'll post it here again: http://www.facebook.com/album.php?aid=64789&l=d2f94&id=593667512
and yes, he had cake. More on that in a moment.
As for the Christmas shopping, well, I have the same dilemma there for Asher. Again, stupid Elmo Live. That's pretty much it. Why is Elmo not cool anymore?! Next to Super Grover (who ranks up there with Batman and Wolverine, as far as I'm concerned, albeit for very different reasons! LOL), Elmo's the coolest Muppet ever! I don't get it! arg. You can't imagine my frustration. And then there's the clothes situation! That's even worse!
I wanted to get the kids Christmas outfits. I found a gorgeous dress for blithe, and an adorable little outfit for Bram (beige, brown and orange, with a sweater vest and a tie – too cute! And not nearly as nerdy as it sounds, so don't laugh). But Asher, he's tricky. I know what you're thinking: "but heather, he's that gorgeous blue-eyed blond with rosy cheeks and a spunky personality! You could put him in almost anything! He'd be great to shop for!" haha, you'd think so, but you'd be wrong, my friend! Spunky personalities are easy to dress. And blond-haired, blue-eyed beauties are easy to dress. But... here's the problem, as I see it:
The "in" colours this season for little boys: blue, grey, white. And so almost everything I've seen for boys this season is blue, grey and white.
I have seen Asher each one of those colours in the recent past.
And put those colours on him, and they will do nothing but accentuate his blue undertones. And when you think that the trendy accent colour for boys this season is black, well, that will just scream "hi, I have half a heart and really low oxygen levels." So, no.
Ok, so the blues, greys, whites and blacks are all out. So, you'd think think red, right? Yeah, good idea. Let's put his "goal" colour right by his face. That'll work. Um, let me think... no. That will simply draw your attention to the fact that he is not anything close to this colour. Sure, there's a pinkish hue to his cheeks, but there's an actual blue to his forehead, nose and mouth. So red's out.
Purple, then. Oh, I'm sorry; I forgot to include that on the list of colours I've seen him turn. So no.
Orange. Yeah. The complementary colour to blue. That won't accentuate his cyanosis. *rolls eyes*
Yellow? No one should wear yellow. Ever. But that's just my opinion. (so not a yellow fan.)
That leaves us with green. At Christmas. Easy, you'd say. Ah, my friend, you have never gone out looking specifically for something green for a blue 2-year-old, now, have you? No. I have. Not so simple. Because apparently, green is not the trendy colour this Christmas. The one year I need it is the one year it's nowhere. Nice.
Well, I shouldn't say "nowhere." I did manage to find a gorgeous sweater at The Children's Place last week in green stripes. And I mean GORGEOUS!!! (they also had a blue one like it, and I was tempted to buy it, but only to use for trips to emerg and such, as a colour reference: "so, he was this colour this morning, and now he's this colour down here, and last night he turned the exact shade of this stripe on the sleeve." Handy, but I think I'll wait till it goes on sale, thank-you very much.) But he needs pants and a shirt to go with it. Perfect. Not a problem. There should be loads in his size (2T), right? Yeah. Maybe. But not in this hemisphere, I'm afraid. They had the perfect cords. So cute. And available in every size but his. And they had the perfect little white dress shirt. Adorable! Also available in every size but his. I can't tell you how much I love shopping for this kid. Ugh. So, there you have the saga of the Christmas outfit, up to today. But we do have a bit of a time element here. You see, my AMAZING friends Geoff and Staci know how obsessed I am with the photography of a friend of theirs (really, it can't be healthy, but seriously, folks, he's incredible!). So what did Geoff and Staci surprise me with the other day? A PHOTO SHOOT WITH CLINT ON THE 14TH!!!!!!!!!!!!!!!!!! AAAAAAAAAAAAAAAAAAH!!!!!!!!!!!!!!!!!! That's a week away!!!!!!!!!!!!!!!!!!!!! So, the older 2 are taken care of as far as their clothes are concerned. But Asher! Eep! I need to go shopping again!
Ok, on to eating by mouth... and this will be quick, because by now you've gone to his birthday pics and seen for yourselves: HE CAN EAT BY MOUTH!!!!!!!!!!!!!!!!!!!!! He ate birthday cake the other night, and he had pizza for supper. And when I say "eating," I mean he's swallowing, actually swallowing, and not aspirating! Nothing is going into his lungs! He can actually swallow!!!!! You have no idea how amazing this actually is! Just a few weeks ago I was getting so discouraged, thinking that he would always be entirely tube-dependent and never able to eat like the rest of us do. Sure, he had be putting food in his mouth for a while now, but he was leaving it in there for hours and we'd be pulling supper out of his mouth before bedtime (which is much more disgusting than it sounds, believe me). He also had pizza tonight, which by now you've read about below. And his new favourite food in the entire world... can you guess? CHEERIOS! How normal is that?! And how thrilled am I?! J You can't even imagine! Growing up, I hated normalcy. Now, I crave it like a toddler craves cheerios. Like Asher craves Cheerios! From the moment he comes downstairs in the morning until the moment he goes to bed at night, he's asking for cheerios: "chee-ose. Kees?" (Side note, here: for his birthday, I managed to find a cloth Elmo book, but I also got him one of those cheerios cup/bowl things they have at the Superstore, and his very own box of Cheerios. And all he wanted was the cheerios! Yay!!! J) and Thursday was his 2-year check-up (also delightfully normal, and mostly all good), and when I told dr b about the cheerios, she said, "oh, ok." (No swallow study yet, mind, but whatever, she said, "oh, ok" so I'm going with that. LOL).
Moving on... what's next?... ah, yes, fighting CCAC. Did you know that Asher doesn't need daytime nursing? That what will really help him to, say, survive and me to get a good night's sleep, is to have stranger sitting up awake in our bedroom (he sleeps in my room for now) all night? That's right. CCAC tried to cut our daytime nursing, which means no more monitoring of his health, and only give us night nursing. Well, actually, she tried for a PSW, who, you'll note, cannot give meds or anything. You can imagine how I reacted. During our hour-long phone conversation the other day, I made it quite clear to her that her plan (which she continued to refer to as our plan regardless of my feelings on the subject) was crap and I would not tolerate it. she argued with me, saying that what I need is sleep, and that if I had better time management I'd be able to get all my living (that is to say, errands, doctor's appointments, picking the kids up from school, rest, breaks from a medically fragile child, etc etc etc etc) on the days he's at Ed's, and that I should be fine to do all of Asher's care by myself with no support the rest of the time. If I had night nursing for Asher, apparently, I would be refreshed in the morning every day. At that comment, I laughed and said, "You don't have a special needs child, do you?" "Well, no," said she, "but I can imagine it's about a hundred times more stressful than parenting a healthy child." "Oh, you think?" I said, ever so politely and not at all bitingly or rolling my eyes. "When was the last time you woke up refreshed?" she asked. "Um, how about, before I had kids." "Well," she replied, "welcome to parenthood." I'm not kidding. That's what she said. So, apparently, what I need is a stranger sitting awake in my bedroom overnight and a more realistic grasp of parenthood, and then I'll be able to handle all of Asher's care by myself. And, throughout our conversation, she kept saying "we're client-directed care" but then in the next sentence it was all about "government mandates" and "responsible use of human resources." Which means, "screw you, mom, I've got a piece of paper from a politician that says you don't need help keeping your child alive."
Ok, if you've met me (or read my blogs, or if you heard me on the phone with her last week), you will know two things: I told her that clearly her priority is not, in fact, Asher's health or survival but rather her precious paperwork. (Yes, I'm just that blunt. Those are my actual words.) And you will know that in the end, I won. She almost cried at one point (never piss me off when it comes to Asher. I'm his momma and I'm gonna do everything I can to keep him alive, and if that means I complain to high-up hospital administrators or make a grown woman cry, I'll do what I have to do). In the end, she said, "well, I'll take what you've said to my manager and I'll call you back in a few minutes." Half an hour later, she called me back. They're leaving Asher's care the way it is right now. She's gone till March now, and at that time, we'll sit down and have a big meeting with herself, her manager, nursing, dietary, and me and we'll all discuss Asher's care and see what he actually needs. But the story's not done.
That afternoon, Asher had an appointment with paeds (he wasn't doing so well that day). I mentioned the CCAC situation to doc, and she, of course, got ticked. For those of you who don't know Asher's paeds, she's a lot like me, only feisty and with a tendency to fight for Asher's wellbeing. I like her. J She wanted all the details: what care we have now, what they wanted to give us, the case manager's name, everything. She said, "I'll give her a call today, because this is not acceptable. And then I'm going to call Steve Peters and tell him that he can either reign in CCAC or come here right now and show me the plans for the respite home they're going to build in St Thomas for these special needs kids and their families. And then I'm going to call the province's child advocate and tell him what CCAC's trying to do." See why I like her? Feisty. I have a lot of respect for that woman. Apparently I was the third parent to come in to her office that week (!) and tell her that CCAC was trying to cut their services. Stupid government mandates that take priority over people's health and lives. ARG!!!!!!!!!!!!!!!!! (If you're interested in getting a little political here, feel free to call your MPP and/or the child advocate about this situation, and feel free to mention Asher specifically. Direct him/her to this blog, if you want. I don't mind. Wink wink) and a funny little end-bit here to the CCAC episode: the case manager called me again on Friday morning last week, and said, "So, dr b called me this morning and we had a very, um,... interesting conversation." I said, "Yeah, I bet you did!" (Oh no, I'm not still ticked). She said, "So, we will be leaving Asher's care the way it is for the next few months, and then in March when we have our conference, she will be joining us to provide us with her perspective. Is that ok with you?" I said, "Absolutely, that's perfect. The only person who knows Asher better than her is me, so I'm quite happy she'll be there." "Good," said the CM, "but now I will need to make one change to Asher's care-" (did you catch that? "We're keeping things the way they are" and then "I have to make one change." Hmmm....) "-and change his services to RPNs instead of RNs." I replied, "We already get RPNs. They share with the RNs." "Well," said she, "I have to change it to only RPNs." Now, again, you've met me, right? And you're aware that I am stubborn and determined, right? And that I will do anything for my boy? Yeah. I said, "No. We're going to have one RN a week. And I want V---." "Um, ok. I can arrange that." Hence my status line last week on Facebook: "Heather is shouting from the rooftops: "VICTORY IS MINE!!!" so, yeah, CCAC sucks, entirely political, not caring about people's health. Esp medically fragile children's health. And in the end, I win. She had no idea who she was dealing with when she called me and tried to cut our services.
Doctor's appointments and mystery vomiting: this will be quick. Asher was vomiting for some reason. For almost 2 weeks. Don't know why. No one could figure it out. I even took him to emerg for it. it started a few days after he was discharged last month and lasted WAY too long for anyone's liking. But, long story short, he didn't drown, didn't even aspirate, and we have all learned a valuable lesson: when you mix pedialyte with pediasure (formula), it curdles. Seriously. Yuck. So don't try to do that. Makes kids barf. And makes moms unhappy. So don't try it.
and Asher's 2-year check-up was on Thursday, which went generally well. He's hitting milestones and growing and speaking at his level and learning new skills all the time. His newest skills: doing up his jacket. I have to start the zipper, but if then he can pull it all the way up. J and when you think that Bram only recently learned how to do up his own coat, this is AMAZING! And his other new skill starts off every morning now: he stands up in his crib, unhooks the feed set from his tube, closes the cap on his tube, and throws the feed set across the room. I didn't know he could do this until the morning I heard something fall on the floor but thought it was just a toy, so I left it. but imagine my surprise when I got up to find a river of formula running across my floor (he hasn't figured out how to pause the feed yet), and his tube closed. Yeah. And by now I've actually watched him do this, and it's quite a sight! That, gentle reader, is one smart toddler! They learn what they live, I guess, and this is what he lives with, so I shouldn't be so surprised, but still! It's awesome! J
ok, I'll stop now. I think that about covers it for now. I'll try to get back to posting more often, but apparently I have to work on my time management skills (gosh, maybe I should get night nursing, and then I can blog at 3am, and stay all caught up. Grr, CCAC, grr). Ok, I'll be good. And I'll try to be better at this posting thing now. I'm sure we're all getting tired of the novels, and would much prefer little blurbs instead. I can't make any promises (you know me too well for that! LOL), but I'll see what I can do. Talk to you later! J
Tuesday, November 11, 2008
wha-?! it's only been a week since i last posted?! are you sure? it's felt so much longer than that.... here's the tale... but be warned, it's epic.
ok, you remember last monday i took asher to london emerg with croup. well, thank-you, dr k for the dose of dex; it worked wonders and the croup cleared up immediately. delightful. still, i kept an eye on the bug (asher, that is) on tuesday, just in case... he doesn't like playing by the rules all the time, so you've gotta watch him like a hawk.
well, wednesday was ed's grandmother's funeral, so i had the kids. asher wasn't quite right. basically, off and on all day, he was tachypnic, irritable, with increased cyanosis (for those non-doctor-types reading this, he was breathing fast but not laboured, cranky cranky cranky, and bluer than usual) and had a VERY runny nose.
so, we went to the funeral. but after the service, asher was still a little off, so i called paeds. she was on call at STEGH last week, so we went to see her there. of course, by the time we got there, asher was... yup, you guessed it... PINK! AND HAPPY! AND BREATHING FINE!!!! ARE YOU KIDDING ME?! i raced all the way back to st thomas to get asher in to see the doc, because there's something strange going on, and he's FINE! sats were 86%!!! i mean, really. what a waste of gas, if you ask me. arg.
so, we went back to the church for the meal. but after a while, we noticed that asher was showing all those sypmtoms again, but with one minor little difference: a fever. i wasn't quite sure what to do, so i took him home, thinking the car ride would do him some good. alas, this time, it did not. so i checked his temp and it was 37.7 C. that's a fever, though not super high. so, i took him to london emerg, because i know what those symptoms can sometimes indicate (sometimes it's just a cold, sometimes it's failure. you never know with asher, though, so i can't take any chances). by the time we got to emerg, his nose had stopped running and his breathing had slowed down somewhat, and of course he was all happy and smiley and asher-esque, his sats were great, but... his fever was up to 38.3! so they gave him some tylenol. (for those wondering why i wouldn't give him tylenol before taking him in, here's my reason: sometimes, the degree of the temp can tell a lot about what's going on. some things lead to high fevers, some to low. it all depends. and there's other factors, too, like mood and colour and breathing and how they all interact with the fever. so, in my opinion, unless it's super high, i want the docs to see his real fever, instead of me telling them what it was. anyone can make up a number. i want them to actually see it, when possible.) ok, rant over...
well, we went right in (as usual. asher never waits in emerg), and dr k was on again. "you couldn't stay away, could you?" "well, you know, he missed you guys yesterday, and he's been begging to come back all day." "yeah, i thought so." lol seriously. i can joke around with the docs. think we're there a lot? anyhoo... i told her asher's numbers from the day, the temps, the resps, the colour (i need to make a colour wheel for easy reference, i think, and carry it around in my purse), the mood, and so forth. she ordered a chest x-ray and a urine sample (bag). both were, of course, clean. no pneumonia, no UTIs, no weird bugs. and by now, asher's fever was gone and he was wandering emerg and flirting with everyone and basically demonstrating why he is (or probably should be) the mascot down there. i mean, really. so, since he was feeling better, doc sent us home, but with the strict instructions that if the symptoms returned, to bring him back to emerg immediately, and they would, of course, do bloodwork and really start looking for the cause, since the obvious culprits had been ruled out. ok, so, we go home. asher sleeps fairly well, mostly due to the fact that it's now late and night and we're both tired.
the next day, which was thursday, ed had the kids, since he didn't have them on wednesday. i went out shopping for work with my friend/"boss" (she owns the scrappin' store where i teach, and i went along to look for papers for this week's class). i'd given ed all my instructions, which i know i don't really have to, but i'm the mother of a SN kid, so i do this for my own peace of mind. basically, it was, "if he's breathing fast, cranky, bluer, or spikes a fever, call me." i figured we'd be ok, at least till i got home. he was fine overnight, and in the morning, he seemed to be doing well enough. (this is where the guilt kicks in.) we were in brantford eating lunch when he called. "how high was asher's fever yesterday?" "38.3. why?" "well, it's 38.5 now." "WHAT?!?!?!?!?!" "38.5." "ok, give him some tylenol, i'll be home as soon as i can."
needless to say, we sped home. especially once ed called and said, "so, i gave him tylenol and motrin, and he's up to 38.7."
they dropped me off at home, i went in the house, picked asher up, threw him in the van, and flew to london emerg. where he was triaged and put in a private room (b/c of his immunodeficiency). where they monitored his sats. for 3 hours. until doc came in and said, "well, his sats are good, and he seems stable. you can go. cardio wants to see you in the morning; do you know where the clinic is?" yeah, so she sent us home. no tests, just sat monitoring.
given the abundance of reflux and the referal to cardio, i was a little paranoid about taking asher home to sleep in his crib with the apnea blanket/monitor that's broken and not working properly. (be warned, more guilt. it may not show up here, but trust me, i'm feeling it.) so i went to wal-mart to spend $125 i don't have on an apnea blanket. thank the good Lord for overdraft (as much as i hate it, arg!). well, see, remember the weather last week, how gorgeous it was? it was beautiful on thursday, so when i took asher to emerg, i had him dressed warmly, but no coat. just blankets on him in the stroller. we weren't going to be outside very long, anyway. but, by the time we got to wal-mart, his breathing was sounding weird, he was crying weird, and when i went to get him out, he was shaking from head to toe. i thought he was just really cold, till i felt his forehead and noticed the fever. but still, i thought, "well, sometimes you get the chills with a fever, so he's just shivering." i wrapped him in blankets and ran into the store. i put him in a cart and we raced to the back of the store, as far from any drafts as possible. he was still shaking. and breathing kind of weird. and not really acting like himself, though i can't really describe it properly. by the time we paid, i was really getting freaked out. i'd grabbed a hoodie because i still thought he was shivering and put it on him in the store (and paid for it, but he was SO wearing it), but he still didn't stop shaking. i put him in the van and decided i couldn't take him home, but i didn't want to take him back to london b/c we'd just gotten brushed off there. i knew our paeds was still on call (we'd only seen her the day before, after all), so i paged her and told her what was going on. i was so calm. well, in my head i was trying to be. in reality, i think i was panicking a bit. asher's fever was only getting higher and he was STILL shaking and breathing weird and not crying normally. she told me to drive straight to STEGH emerg, park in front of the doors and run him in; she'd meet us there. "and heather," she added, "drive carefully." "i will." "no, heather, seriously, drive carefully." (how panicky was i?!)
so, i did as i was told. parked right in front of the emerg doors and ran him inside. they were waiting for us, and dr b was right there. we were rushed into a private room, and asher was stripped faster than i'd ever seen anyone strip a child. he was still shaking. his fever, when they checked it, was 39.4 C. (not sure exactly how high that is in F, but it's up there. i'm hospital mom, remember, i only know celsius, milligrams and kilos. that's it. ask me pounds and inches and stuff, and i don't know. but metric, that's what i know.) anyway... doc was assessing asher, and she noticed that he was holding his head to one side, so she tried to turn it gently the other way. asher flipped out. so she stopped. then tried to lower his chin toward his chest. he flipped out again. so she stopped. another doctor came in, and she showed him. they looked at each other and nodded. know what's lovely? when two docs look at each other and nod silently, right in front of me. because you know what? the second asher flipped when she tried to turn his head the first time, i knew what she was thinking. meningitis. so, then she looked at me and said, "ok, with all these symptoms, and with the pain when he turns his head, we're going to have to do an LP. we need to check his spinal fluid. i have to do it. you don't have to stay in here when i do it, though." um, good!
i went outside and made some phone calls.
i called ed, and ever so calmly got him caught up.
then i called pam, and ever so calmly got her caught up. she said, "i'll be right there. give me 10 minutes."
then i called annie, and ever so calmly got her caught up.
within 15 minutes, pam and hal were there with coffee, and annie arrived shortly after. and apparently, ed was trying to find a way to come to the hospital, because he'd never heard me freaking out during a medical emergency before. (yeah, those "ever so calmly" comments... i wish! i was kind of, um, yeah, freaking. crying. panicking. asher had never seized before, and meningitis and sepsis are scary, and we had just been in emerg, and i wasn't with him all day and i should have been and it's all my fault b/c i sent the kids to school b/c i was tired and now asher gets some weird bug that could kill him. oh, and btw... the "LP"... for those who don't know... it's a spinal tap. it's just the fancy medi-term for it. lumbar something-or-other. poke? i think that's it, but i could be wrong.) so, i have a great support network, who all rushed to be with me when i was scared out of my mind. and after the poke, dr b gave asher a stuffed animal, an adorable little dog that he loves. thanks, dr b! :)
they also gave asher his very own... IV. which took several pokes, and ended up in his forehead, because that's the only place where the veins were any good. so they started him on fluids and antibiotics. a big one. ceftriaxone or cefotaxime (sp?). one of those two, i get them confused. they're both big, though. they cover just about everything. so that was good... until the IV came out mid-dose. so they had to give the rest by IM injection in his thigh. they decided to do that instead of trying for another IV. by now they were already working on getting a transport to london, so they thought london should get to put the IV back in somewhere. everyone in st thomas as tired of poking him. (thank-you, by the way.)
so, off we went to london around midnight. dr b went in the ambulance with asher, and hal drove me. obviously, they got there first, since they had lights and sirens the whole way. "it's asher" said dr b when questioned.
(oh, the LP was clean, which ruled out meningitis. but that left us with... query sepsis with febrile seizures. nice, eh? that's what we were working with.)
by the time hal and i arrived in emerg, dr b was getting the london attending all caught up, including specific instructions that went a little like this, "this is Mom. listen to her. whatever she says, go with it. she knows asher better than anyone, if she says something's wrong, go with it; she knows what she's talking about." aw, i'm blushing. and, YAY! lol i like instructions like that. lol because what i really need is my ego inflated just a little. lol
ok, so they got an IV in, eventually. (thank-you, hal, for not punching anyone during all those pokes. that would not have been good.) i talked with the clerk and gave her asher's complete history.
we spent the night in emerg. by morning, all the admission stuff was done and there was a room waiting for us on the floor.
ok, so we were to be admitted for 48 hours for IV meds and observation while we awaited preliminary culture results. meanwhile, until saturday night, asher was still spiking high fevers every 4 to 6 hours (basically, once the tylenol wore off), and often having seizures with the fever. (FYI: febrile seizures are real seizures that happen with a high fever. they aren't painful, they don't cause any damage to the brain, they don't significantly raise the risk of developing epilepsy or any other seizure disorders. there's really no significant risk associated with febrile seizures, unless the child is in the bathtub at the time, in which case there's a risk of drowning. the only other real risk is high blood pressure, heart attack and stroke... for the parent who's never seen this before and then had a doc ordering spinal taps and huge IV meds and lights and sirens all the way to london! i'm ok now, but on thursday night, yeah, not so much!) so, it was usual hospital life for us this weekend, as we waited for the culture results.
which we got on sunday morning.
clean.
everything was clean.
no bugs.
YAY!!!!!
although, you do realize, of course, that cardio was hovering all weekend. first, liz and sarah came up on friday morning, surprised to find us there with query sepsis, although that explained why we didn't come for our appointment in clinic that morning. and about 20 mins after they assessed asher (and horrifyingly confirmed the whole "hard to discipline a kid who'll have a heart attack if he cries too hard" thing... honestly, is it too much to ask that cardio lie to me once in a while and say "mom, you're paranoid"? i know it's true - about the heart attack, not the paranoia - so really, just play along, please? am i really asking so much? i don't think so!), they came back up with dr r, our new cardio. he was on call this weekend. he came up every day to check on asher. haha, he asked me if i had any questions for him about all this. i laughed and said, "dear me, no, we've been through this, and i know too much as it is!" sometimes i wish i had questions for the docs. that would be nice, i think. just once... a mom can dream, right? lol
ok, so, cultures were clean, which means no meningitis, no sepsis, no endocarditis, no bacterial upper respiratory tract infection. they came up with this: a virus. but... consider this...
white cells, including neutrophyls, were "sky high." these fight bacterial infections. some other kind of cell (curse you, immunology!!!!!!!!) which fights viral infections, was very low. now, i know what you're thinking, and it's actually the other way around. if the cells are high, it's because they've been creating more and more troops to fight off an invading illness. think military strategy for a moment (ironic metaphor for a pacifist, but it works, so we'll just go with it and leave politics alone, shall we?): you never get attacked, there's no huge risk to the country, you have no wars to fight. do you really need oodles and oodles of troops? no. a couple batalions'll do. (oh, i'm so not a military strategist, can you tell? lol) but... once there's a war and you're in it, suddenly there's a draft and the numbers of soldiers swell and you build yourself a strong army to conquer the enemy. antibiotics are like the countries you signed pacts with, and they come and help you out during a war. they help, but it's still you fighting your war. (wow, maybe i do get some of this immuno stuff. still, i want to know more...) the point is this: those bug-fighting white cells, at such high levels, indicate a bacterial infection somewhere. don't know where, but all the numbers indicate bacteria. besides which, we got some fluid and big meds into him, and he improved in a few days. those virus-fighting cells were really low, indicating that there was likely not a virus. i don't know. dr b and dr s (infectious disease) seem to think that there was a bug in there somewhere. or, also likely, asher doesn't do things the normal way. the new theory is that asher knows the rules, but chooses to ignore them. he didn't miss any memos. he got them, read them, and said, "oh, you think so, do you? mwahaha." like the Joker. or lex luther. or some other cool bad guy.
when docs changed on monday, we had a consultant we'd never met before. before he left, he reminded me, "you know, even kids as complicated as asher still get colds sometimes, and you just have to get used to that."
ok, so very long story short (lol), asher was admitted thursday in london with query sepsis with febrile seizures. he was discharged monday with a cold.
sorry it's taken me so long to post here. i knew it would be long, and i was dreading it. (mostly, i'm just trying to ignore my guilt, and by writing it here, i'm sharing it with you all. i was trying to avoid doing that.) anyway, now you're all caught up. asher's starting to feel better, though he's still cranky. i think he's just tired from a long weekend at the hospital. but aren't we all? well, have a good night, and i'll talk to you later (and i'll try to be brief next time). :)
well, wednesday was ed's grandmother's funeral, so i had the kids. asher wasn't quite right. basically, off and on all day, he was tachypnic, irritable, with increased cyanosis (for those non-doctor-types reading this, he was breathing fast but not laboured, cranky cranky cranky, and bluer than usual) and had a VERY runny nose.
so, we went to the funeral. but after the service, asher was still a little off, so i called paeds. she was on call at STEGH last week, so we went to see her there. of course, by the time we got there, asher was... yup, you guessed it... PINK! AND HAPPY! AND BREATHING FINE!!!! ARE YOU KIDDING ME?! i raced all the way back to st thomas to get asher in to see the doc, because there's something strange going on, and he's FINE! sats were 86%!!! i mean, really. what a waste of gas, if you ask me. arg.
so, we went back to the church for the meal. but after a while, we noticed that asher was showing all those sypmtoms again, but with one minor little difference: a fever. i wasn't quite sure what to do, so i took him home, thinking the car ride would do him some good. alas, this time, it did not. so i checked his temp and it was 37.7 C. that's a fever, though not super high. so, i took him to london emerg, because i know what those symptoms can sometimes indicate (sometimes it's just a cold, sometimes it's failure. you never know with asher, though, so i can't take any chances). by the time we got to emerg, his nose had stopped running and his breathing had slowed down somewhat, and of course he was all happy and smiley and asher-esque, his sats were great, but... his fever was up to 38.3! so they gave him some tylenol. (for those wondering why i wouldn't give him tylenol before taking him in, here's my reason: sometimes, the degree of the temp can tell a lot about what's going on. some things lead to high fevers, some to low. it all depends. and there's other factors, too, like mood and colour and breathing and how they all interact with the fever. so, in my opinion, unless it's super high, i want the docs to see his real fever, instead of me telling them what it was. anyone can make up a number. i want them to actually see it, when possible.) ok, rant over...
well, we went right in (as usual. asher never waits in emerg), and dr k was on again. "you couldn't stay away, could you?" "well, you know, he missed you guys yesterday, and he's been begging to come back all day." "yeah, i thought so." lol seriously. i can joke around with the docs. think we're there a lot? anyhoo... i told her asher's numbers from the day, the temps, the resps, the colour (i need to make a colour wheel for easy reference, i think, and carry it around in my purse), the mood, and so forth. she ordered a chest x-ray and a urine sample (bag). both were, of course, clean. no pneumonia, no UTIs, no weird bugs. and by now, asher's fever was gone and he was wandering emerg and flirting with everyone and basically demonstrating why he is (or probably should be) the mascot down there. i mean, really. so, since he was feeling better, doc sent us home, but with the strict instructions that if the symptoms returned, to bring him back to emerg immediately, and they would, of course, do bloodwork and really start looking for the cause, since the obvious culprits had been ruled out. ok, so, we go home. asher sleeps fairly well, mostly due to the fact that it's now late and night and we're both tired.
the next day, which was thursday, ed had the kids, since he didn't have them on wednesday. i went out shopping for work with my friend/"boss" (she owns the scrappin' store where i teach, and i went along to look for papers for this week's class). i'd given ed all my instructions, which i know i don't really have to, but i'm the mother of a SN kid, so i do this for my own peace of mind. basically, it was, "if he's breathing fast, cranky, bluer, or spikes a fever, call me." i figured we'd be ok, at least till i got home. he was fine overnight, and in the morning, he seemed to be doing well enough. (this is where the guilt kicks in.) we were in brantford eating lunch when he called. "how high was asher's fever yesterday?" "38.3. why?" "well, it's 38.5 now." "WHAT?!?!?!?!?!" "38.5." "ok, give him some tylenol, i'll be home as soon as i can."
needless to say, we sped home. especially once ed called and said, "so, i gave him tylenol and motrin, and he's up to 38.7."
they dropped me off at home, i went in the house, picked asher up, threw him in the van, and flew to london emerg. where he was triaged and put in a private room (b/c of his immunodeficiency). where they monitored his sats. for 3 hours. until doc came in and said, "well, his sats are good, and he seems stable. you can go. cardio wants to see you in the morning; do you know where the clinic is?" yeah, so she sent us home. no tests, just sat monitoring.
given the abundance of reflux and the referal to cardio, i was a little paranoid about taking asher home to sleep in his crib with the apnea blanket/monitor that's broken and not working properly. (be warned, more guilt. it may not show up here, but trust me, i'm feeling it.) so i went to wal-mart to spend $125 i don't have on an apnea blanket. thank the good Lord for overdraft (as much as i hate it, arg!). well, see, remember the weather last week, how gorgeous it was? it was beautiful on thursday, so when i took asher to emerg, i had him dressed warmly, but no coat. just blankets on him in the stroller. we weren't going to be outside very long, anyway. but, by the time we got to wal-mart, his breathing was sounding weird, he was crying weird, and when i went to get him out, he was shaking from head to toe. i thought he was just really cold, till i felt his forehead and noticed the fever. but still, i thought, "well, sometimes you get the chills with a fever, so he's just shivering." i wrapped him in blankets and ran into the store. i put him in a cart and we raced to the back of the store, as far from any drafts as possible. he was still shaking. and breathing kind of weird. and not really acting like himself, though i can't really describe it properly. by the time we paid, i was really getting freaked out. i'd grabbed a hoodie because i still thought he was shivering and put it on him in the store (and paid for it, but he was SO wearing it), but he still didn't stop shaking. i put him in the van and decided i couldn't take him home, but i didn't want to take him back to london b/c we'd just gotten brushed off there. i knew our paeds was still on call (we'd only seen her the day before, after all), so i paged her and told her what was going on. i was so calm. well, in my head i was trying to be. in reality, i think i was panicking a bit. asher's fever was only getting higher and he was STILL shaking and breathing weird and not crying normally. she told me to drive straight to STEGH emerg, park in front of the doors and run him in; she'd meet us there. "and heather," she added, "drive carefully." "i will." "no, heather, seriously, drive carefully." (how panicky was i?!)
so, i did as i was told. parked right in front of the emerg doors and ran him inside. they were waiting for us, and dr b was right there. we were rushed into a private room, and asher was stripped faster than i'd ever seen anyone strip a child. he was still shaking. his fever, when they checked it, was 39.4 C. (not sure exactly how high that is in F, but it's up there. i'm hospital mom, remember, i only know celsius, milligrams and kilos. that's it. ask me pounds and inches and stuff, and i don't know. but metric, that's what i know.) anyway... doc was assessing asher, and she noticed that he was holding his head to one side, so she tried to turn it gently the other way. asher flipped out. so she stopped. then tried to lower his chin toward his chest. he flipped out again. so she stopped. another doctor came in, and she showed him. they looked at each other and nodded. know what's lovely? when two docs look at each other and nod silently, right in front of me. because you know what? the second asher flipped when she tried to turn his head the first time, i knew what she was thinking. meningitis. so, then she looked at me and said, "ok, with all these symptoms, and with the pain when he turns his head, we're going to have to do an LP. we need to check his spinal fluid. i have to do it. you don't have to stay in here when i do it, though." um, good!
i went outside and made some phone calls.
i called ed, and ever so calmly got him caught up.
then i called pam, and ever so calmly got her caught up. she said, "i'll be right there. give me 10 minutes."
then i called annie, and ever so calmly got her caught up.
within 15 minutes, pam and hal were there with coffee, and annie arrived shortly after. and apparently, ed was trying to find a way to come to the hospital, because he'd never heard me freaking out during a medical emergency before. (yeah, those "ever so calmly" comments... i wish! i was kind of, um, yeah, freaking. crying. panicking. asher had never seized before, and meningitis and sepsis are scary, and we had just been in emerg, and i wasn't with him all day and i should have been and it's all my fault b/c i sent the kids to school b/c i was tired and now asher gets some weird bug that could kill him. oh, and btw... the "LP"... for those who don't know... it's a spinal tap. it's just the fancy medi-term for it. lumbar something-or-other. poke? i think that's it, but i could be wrong.) so, i have a great support network, who all rushed to be with me when i was scared out of my mind. and after the poke, dr b gave asher a stuffed animal, an adorable little dog that he loves. thanks, dr b! :)
they also gave asher his very own... IV. which took several pokes, and ended up in his forehead, because that's the only place where the veins were any good. so they started him on fluids and antibiotics. a big one. ceftriaxone or cefotaxime (sp?). one of those two, i get them confused. they're both big, though. they cover just about everything. so that was good... until the IV came out mid-dose. so they had to give the rest by IM injection in his thigh. they decided to do that instead of trying for another IV. by now they were already working on getting a transport to london, so they thought london should get to put the IV back in somewhere. everyone in st thomas as tired of poking him. (thank-you, by the way.)
so, off we went to london around midnight. dr b went in the ambulance with asher, and hal drove me. obviously, they got there first, since they had lights and sirens the whole way. "it's asher" said dr b when questioned.
(oh, the LP was clean, which ruled out meningitis. but that left us with... query sepsis with febrile seizures. nice, eh? that's what we were working with.)
by the time hal and i arrived in emerg, dr b was getting the london attending all caught up, including specific instructions that went a little like this, "this is Mom. listen to her. whatever she says, go with it. she knows asher better than anyone, if she says something's wrong, go with it; she knows what she's talking about." aw, i'm blushing. and, YAY! lol i like instructions like that. lol because what i really need is my ego inflated just a little. lol
ok, so they got an IV in, eventually. (thank-you, hal, for not punching anyone during all those pokes. that would not have been good.) i talked with the clerk and gave her asher's complete history.
we spent the night in emerg. by morning, all the admission stuff was done and there was a room waiting for us on the floor.
ok, so we were to be admitted for 48 hours for IV meds and observation while we awaited preliminary culture results. meanwhile, until saturday night, asher was still spiking high fevers every 4 to 6 hours (basically, once the tylenol wore off), and often having seizures with the fever. (FYI: febrile seizures are real seizures that happen with a high fever. they aren't painful, they don't cause any damage to the brain, they don't significantly raise the risk of developing epilepsy or any other seizure disorders. there's really no significant risk associated with febrile seizures, unless the child is in the bathtub at the time, in which case there's a risk of drowning. the only other real risk is high blood pressure, heart attack and stroke... for the parent who's never seen this before and then had a doc ordering spinal taps and huge IV meds and lights and sirens all the way to london! i'm ok now, but on thursday night, yeah, not so much!) so, it was usual hospital life for us this weekend, as we waited for the culture results.
which we got on sunday morning.
clean.
everything was clean.
no bugs.
YAY!!!!!
although, you do realize, of course, that cardio was hovering all weekend. first, liz and sarah came up on friday morning, surprised to find us there with query sepsis, although that explained why we didn't come for our appointment in clinic that morning. and about 20 mins after they assessed asher (and horrifyingly confirmed the whole "hard to discipline a kid who'll have a heart attack if he cries too hard" thing... honestly, is it too much to ask that cardio lie to me once in a while and say "mom, you're paranoid"? i know it's true - about the heart attack, not the paranoia - so really, just play along, please? am i really asking so much? i don't think so!), they came back up with dr r, our new cardio. he was on call this weekend. he came up every day to check on asher. haha, he asked me if i had any questions for him about all this. i laughed and said, "dear me, no, we've been through this, and i know too much as it is!" sometimes i wish i had questions for the docs. that would be nice, i think. just once... a mom can dream, right? lol
ok, so, cultures were clean, which means no meningitis, no sepsis, no endocarditis, no bacterial upper respiratory tract infection. they came up with this: a virus. but... consider this...
white cells, including neutrophyls, were "sky high." these fight bacterial infections. some other kind of cell (curse you, immunology!!!!!!!!) which fights viral infections, was very low. now, i know what you're thinking, and it's actually the other way around. if the cells are high, it's because they've been creating more and more troops to fight off an invading illness. think military strategy for a moment (ironic metaphor for a pacifist, but it works, so we'll just go with it and leave politics alone, shall we?): you never get attacked, there's no huge risk to the country, you have no wars to fight. do you really need oodles and oodles of troops? no. a couple batalions'll do. (oh, i'm so not a military strategist, can you tell? lol) but... once there's a war and you're in it, suddenly there's a draft and the numbers of soldiers swell and you build yourself a strong army to conquer the enemy. antibiotics are like the countries you signed pacts with, and they come and help you out during a war. they help, but it's still you fighting your war. (wow, maybe i do get some of this immuno stuff. still, i want to know more...) the point is this: those bug-fighting white cells, at such high levels, indicate a bacterial infection somewhere. don't know where, but all the numbers indicate bacteria. besides which, we got some fluid and big meds into him, and he improved in a few days. those virus-fighting cells were really low, indicating that there was likely not a virus. i don't know. dr b and dr s (infectious disease) seem to think that there was a bug in there somewhere. or, also likely, asher doesn't do things the normal way. the new theory is that asher knows the rules, but chooses to ignore them. he didn't miss any memos. he got them, read them, and said, "oh, you think so, do you? mwahaha." like the Joker. or lex luther. or some other cool bad guy.
when docs changed on monday, we had a consultant we'd never met before. before he left, he reminded me, "you know, even kids as complicated as asher still get colds sometimes, and you just have to get used to that."
ok, so very long story short (lol), asher was admitted thursday in london with query sepsis with febrile seizures. he was discharged monday with a cold.
sorry it's taken me so long to post here. i knew it would be long, and i was dreading it. (mostly, i'm just trying to ignore my guilt, and by writing it here, i'm sharing it with you all. i was trying to avoid doing that.) anyway, now you're all caught up. asher's starting to feel better, though he's still cranky. i think he's just tired from a long weekend at the hospital. but aren't we all? well, have a good night, and i'll talk to you later (and i'll try to be brief next time). :)
Sunday, September 14, 2008
ok, i was waiting to get a video, but...
i've lost my camera. i know, i know, how can any self-respecting scrapper and mother lose her camera? well, somehow, i've managed to. and no, it's not on my desk. trust me, i've looked. it's not there. so...
what i wanted to do was post a video of this, thereby alerting the world. but alas, that is not to be at this point in time. so, i'll just tell you, and promise a video as soon as it becomes available.
that's right, folks, my little baby is walking. it's so cute, he walks like frankenstein, not bending his knees most of the time. why is it that they understand that the knees bend for crawling, but not for walking? hmm... anyhoo... yeah, "he's bipedal," as Grammy Joyce puts it.
like i said, i'll post a video as soon as i can, but if you've seen my house lately, you'll know not to hold your breath waiting. lol talk to you later! :)
what i wanted to do was post a video of this, thereby alerting the world. but alas, that is not to be at this point in time. so, i'll just tell you, and promise a video as soon as it becomes available.
ASHER IS WALKING!!!!!!!!!!!!!!!!!!!!!!
that's right, folks, my little baby is walking. it's so cute, he walks like frankenstein, not bending his knees most of the time. why is it that they understand that the knees bend for crawling, but not for walking? hmm... anyhoo... yeah, "he's bipedal," as Grammy Joyce puts it.
like i said, i'll post a video as soon as i can, but if you've seen my house lately, you'll know not to hold your breath waiting. lol talk to you later! :)
Tuesday, August 12, 2008
the good, the bad and the ugly. well, i don't really know what the "ugly" would be here, but it's a catchy title, so i'm going with it.
i decided to post about asher's appointments all at once, saving us all some time. however, if you're like one of my friends, you've been going crazy (however imperceptably *wink*) waiting. well, the wait is over, my friends. here we go:
CARDIOLOGY (monday afternoon)
no echo, no ECG. they did these recently already, and they don't like to do too many tests. asher's weight is now 12.1 kg (a little over 26 lbs), though just how much of that is fluid and how much is him, i can't say. as for height, he is now at 79.5 cm (32"). that's quite a spurt: after his surgery in june, at post-op clinic, he was 75 cm. so he's gained almost 5 lbs in less than 2 weeks (can you say "fluid overload"?), but he's grown about 2 inches in the last 2 months! yikes! no wonder he can pull stuff off the bathroom counter now (yet another reason we keep the bathroom door closed. immunodeficient toddlers don't play in toilets. well, asher does, but he shouldn't. anyway...) ok, enough of the fluff, on to the meat:
liz was not impressed with asher yesterday. not that she should be. i can't imagine it's a good feeling to see a patient in congestive heart failure. and that's what this is. they can't understand why it's happening, though. yes, fluid overload, but... it came on so fast. we've been upping the volume of formula for a while now, and we've been going pretty slowly. but this came on somewhat out of the blue in the last week or so. sure, there were hints that it was coming (remember the trip to emerg when he was grey? yeah), but once it got going... well, let's just say that asher's reputation of crashing fast is well deserved. he was so short of breath during clinic. and while the colour on his forehead was better, liz said that his nose, mouth, hands and feet are blue/grey. she was also unimpressed by the puffiness around his eyes, and as she told him, "children your age shouldn't have folds around their ankles anymore." to which i replied, "what ankles?" she just kind of nodded reluctantly.
ok, so cardio was a roaring success. yeah, right. i checked out the orders for the bloodwork on our way over (you know me: hand me a piece of paper and i'm going to read it, regardless of whether it makes sense to me or not. this is how i learn too much, folks). and right at the top, it said this: REASON FOR TEST: HLHS w/ CHF & cyanosis. well, isn't that special. if you don't know what that means, thank the Good Lord. if you do, you might be vomiting with me right about now.
yeah, liz was right on friday. asher should be doing better than this.
and now moving on....
NEPHROLOGY (tuesday morning)
well, this is the "good" i refered to in the title. here's the deal:
asher's nephrocalcinosis, the calcium that has built up in his kidneys, is decreasing!!!! there's less in there! that's the miracle of HCT, my friends. this is what happens when nephro and cardio work together on a situation (back in march, asher needed a BP med, but he was still on the study drug, so they wanted to stay away from that same class of meds. so nephro decided on a diuretic, but since lasix would cause more calcium to build up, he consulted with cardio and they decided on HCT. the whole incident brought a tear to my eye and was, for so very many reasons, a dream come true. all you SN parents reading this know what i mean. sub-specialists never consult with other specialties. it's like there's no other organs but theirs. i'm not joking. so this was just beautiful.). so, yeah, less calcium means the filters are not as clogged, which means less chance of infection and better kidney function. that's right, folks, IT WAS ALL GOOD NEWS!!!!
but wait, there's more:
honestly, what am i going to do with all that time (other than cardio and CV surgery stuff, i mean, duh!)?! do you realize that we have never been able to go 6 months between appointments with any of asher's doctors?! this has never happened before, and to be honest, i'm still a little shocked. i mean, this just doesn't happen in Asherland! not that i'm complaining, mind you. honestly, i could have hugged dr filler when he said that... if i hadn't been lying unconscious on the floor! lol so, yeah. good news from nephro. yay!!!
so there you have it. the good, the bad, and i mentioned the ugly yesterday (which would have been my "wardrobe malfunction" during my meeting with dr a). so, that's it for today. i thought i'd end with the good news. oh, crap, i forgot one more thing from cardio. so i guess we're ending on a downer (again). sorry. but here it is:
liz wants to see asher again in 4 weeks. last time it was 6 weeks. now it's 4. weeks. not months. weeks. notice, the appointments are getting closer together. they don't do that because they like to see your smiling face. nope. means they need to keep a close eye on you. and, if you've been keeping track, asher's next cardio appointment is next week in toronto, and liz knew that when she said 4 weeks. so, average that out, and we're looking at 2 weeks between appointments right now. why does this feel so familiar? oh, right. it was like this pre-Glenn. the first stage. yup, wanna vomit. anyone else? ugh.
well, i think that's it for today. for real, this time. promise. and hopefully, i'll have nothing to report for a while. talk to you later. much later. ttfn.
CARDIOLOGY (monday afternoon)
no echo, no ECG. they did these recently already, and they don't like to do too many tests. asher's weight is now 12.1 kg (a little over 26 lbs), though just how much of that is fluid and how much is him, i can't say. as for height, he is now at 79.5 cm (32"). that's quite a spurt: after his surgery in june, at post-op clinic, he was 75 cm. so he's gained almost 5 lbs in less than 2 weeks (can you say "fluid overload"?), but he's grown about 2 inches in the last 2 months! yikes! no wonder he can pull stuff off the bathroom counter now (yet another reason we keep the bathroom door closed. immunodeficient toddlers don't play in toilets. well, asher does, but he shouldn't. anyway...) ok, enough of the fluff, on to the meat:
liz was not impressed with asher yesterday. not that she should be. i can't imagine it's a good feeling to see a patient in congestive heart failure. and that's what this is. they can't understand why it's happening, though. yes, fluid overload, but... it came on so fast. we've been upping the volume of formula for a while now, and we've been going pretty slowly. but this came on somewhat out of the blue in the last week or so. sure, there were hints that it was coming (remember the trip to emerg when he was grey? yeah), but once it got going... well, let's just say that asher's reputation of crashing fast is well deserved. he was so short of breath during clinic. and while the colour on his forehead was better, liz said that his nose, mouth, hands and feet are blue/grey. she was also unimpressed by the puffiness around his eyes, and as she told him, "children your age shouldn't have folds around their ankles anymore." to which i replied, "what ankles?" she just kind of nodded reluctantly.
i asked if she had any ideas why this happened. she can't explain it, so we were sent for bloodwork. she wanted to check a bunch of things, but one of the main tests was to check his albumin levels. (your phlebotomy lesson o' the day: albumin is a protein in the blood. it's the largest molecule in there, and it's the part of the blood that holds water. if your albumin is low, there's not as much in your blood to hold in the water, so fluid just leaks into all the tissue of your body, causing puffiness, shortness of breath, etc.) well, it's now tuesday night, and i have yet to hear from liz, which means albumin is fine. if it were low, asher would have to be transfused, and then we'd get into that whole "CMV-negative and irradiated" issue, because of course asher can't have the regular blood products off the shelf. it has to be special. can he do nothing the easy way? i mean, seriously!!! anyway... albumin is fine, which means no transfusion. but, that also means... and, um, how can i put this? ah, this captures it nicely:
WTF???????????????
yeah, liz was right on friday. asher should be doing better than this.
and now moving on....
NEPHROLOGY (tuesday morning)
well, this is the "good" i refered to in the title. here's the deal:
asher's nephrocalcinosis, the calcium that has built up in his kidneys, is decreasing!!!! there's less in there! that's the miracle of HCT, my friends. this is what happens when nephro and cardio work together on a situation (back in march, asher needed a BP med, but he was still on the study drug, so they wanted to stay away from that same class of meds. so nephro decided on a diuretic, but since lasix would cause more calcium to build up, he consulted with cardio and they decided on HCT. the whole incident brought a tear to my eye and was, for so very many reasons, a dream come true. all you SN parents reading this know what i mean. sub-specialists never consult with other specialties. it's like there's no other organs but theirs. i'm not joking. so this was just beautiful.). so, yeah, less calcium means the filters are not as clogged, which means less chance of infection and better kidney function. that's right, folks, IT WAS ALL GOOD NEWS!!!!
but wait, there's more:
WE DON'T GO BACK TILL FEBRUARY!!!!!!!!!! THAT'S 6 MONTHS AWAY!!!!!!!!!!!!!!!!
honestly, what am i going to do with all that time (other than cardio and CV surgery stuff, i mean, duh!)?! do you realize that we have never been able to go 6 months between appointments with any of asher's doctors?! this has never happened before, and to be honest, i'm still a little shocked. i mean, this just doesn't happen in Asherland! not that i'm complaining, mind you. honestly, i could have hugged dr filler when he said that... if i hadn't been lying unconscious on the floor! lol so, yeah. good news from nephro. yay!!!
so there you have it. the good, the bad, and i mentioned the ugly yesterday (which would have been my "wardrobe malfunction" during my meeting with dr a). so, that's it for today. i thought i'd end with the good news. oh, crap, i forgot one more thing from cardio. so i guess we're ending on a downer (again). sorry. but here it is:
liz wants to see asher again in 4 weeks. last time it was 6 weeks. now it's 4. weeks. not months. weeks. notice, the appointments are getting closer together. they don't do that because they like to see your smiling face. nope. means they need to keep a close eye on you. and, if you've been keeping track, asher's next cardio appointment is next week in toronto, and liz knew that when she said 4 weeks. so, average that out, and we're looking at 2 weeks between appointments right now. why does this feel so familiar? oh, right. it was like this pre-Glenn. the first stage. yup, wanna vomit. anyone else? ugh.
well, i think that's it for today. for real, this time. promise. and hopefully, i'll have nothing to report for a while. talk to you later. much later. ttfn.
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