Tuesday, August 18, 2009

and the word of the day is: ABSURD, as in, "the last couple months have brought a million things i would NEVER have expected"

ok, so apparently, it's been about 2 months since i posted here about asher himself. and wow, so much has happened. but for once,


i start with the not-so good, and then move into the good, so we're ending on a happy note today. sound good? ;)

ok... where did i leave off in june? ah, yes, the trip to our local emerg because of a tube infection, and doc wanted to admit asher for CHF (congestive heart failure). HAHAHAHAHA!!!!!! sorry, it's just that CHF is just such a normal part of our lives (horrifying as that may be, it's true) that i don't really think of it as admit-worthy. ah, well, it all got sorted out, and we left with a script for cipro.

which clogged his tube. yeah. seriously. so, the friday after we got the script, we were in Intervention Radiology for a tube replacement. i hate those, i really do. and asher's not a huge fan of them, either. :(

so they changed the tube, and saturday night, the cipro clogged his tube. again. so...

sunday morning, we were back in IR for another tube replacement. and you'd think, by now, i'd be pretty used to all this, and while it's stressful for both of us, i can get through it. apparently, this time, not so much. haha bit of a story here:

so, they've put in the tube, and the nurse is just securing it. doc has wandered off to do whatever docs do after shoving a tube into a toddler's small bowel. anyway, i'm standing there, still holding asher down, when all of a sudden,

"i'm going to pass out."

they look at me and i'm pale and clearly not feeling right. so they order me onto the floor. (and it's sunday morning, remember, so picture all this with me dressed up for church. yeah.) in comes the doctor, who grabs me a stool for my feet. then he gets me a pillow, because i'm resting my head on a (dirty) concrete floor. (and yes, in the middle of all this comotion, i actually thought, but this is going to wreck my hair and i still have to go to church! funny what the mind does at times like that, eh? because there's no way i'm that shallow! ) so then they give me a choice: do i want ginger ale, or orange juice? i didn't know, so they brought me ginger ale. and so there i was, lying on the floor in interventional radiology, with a pillow and a warm blanket, my feet on a stool, drinking ginger ale while the doctor dressed asher for me. it was quite a scene. so they let me lie there for a few minutes, to make sure i was ok, and then a nurse walked with me down the hall to mom and the kids, who were waiting.

now, this is how often we're in IR: mom asked what happened (because i am still very pale and clearly not feeling well), so the nurse fills her in. and then adds, "it's funny, because she's never done this before! all the times she's been here, and she's always handled it so well, she's the mom who can take it, so this is just so surprising!" that's right, she used the phrase "all the times she's been here." this nurse knows me. in interventional radiology. my least favourite part of a hospital. yup. ugh. but i recovered, and when we got to church, asher ran into his classroom and played as if nothing had happened.

so we finished the course of meds, and it was good.

then a week or so later, asher came down with a nasty cough. a barky cough. in july. yeah. croup. only asher gets croup in JULY!!! so off we trek to emerg, where we have a delightful chat with dr k, who was not the attending, but just popped over to chat. that's right, a social call from an emerg doc. yeah. nice, but in an absurd sort of way. anyway, we chatted with her, ash got a dose of dex, and we went home, and all was good.

and then i'm sure there was another tube change in there somewhere, but i can't remember when or why. but there was.

then his tube site got infected. again. ugh. so off to (london) emerg we trek once more. and the attending that evening was dr joubert, whom i really like. head of emerg, and as i recall, his specialty is paeds cardio. which i appreciate. LOL ok, so he looks at the site, swabs it, and gives us script for an antibiotic. but not cipro! something else, that starts with d, i think, but i don't remember what it's called. but it worked, so you can bet next time i'll be calling the pharmacy to find out what it was so i can mention it to whichever doc we're seeing. because this med DIDN'T CLOG HIS TUBE!!!!! HOORAY!!!!!!!

now, once that course was done, asher was pink, happy, not puffy, breathing nicely, everything was awesome! and THAT, my friends, was when we had a cardiology visit in toronto.

the nurse, siobhan, took one look at asher and nearly cried because he looked so good. all his numbers were absolutely perfect (well, for him, anyway). sats: 85-86%. that's all i remember. i didn't bother paying attention to his HR and BP because they were perfect, so who cares!! asher had energy, he was playful and happy; honestly, i have NEVER seen him look as good as he looked that day. even dr russell couldn't believe it! she was shocked that he looked so good, especially after 2 tube infections and croup. it was just so wonderful!

oh, and her decision re upcoming clinics: she's cool with us sticking with her in toronto, which is nice, because i'm still refusing to deal with london. and as for upcoming clinic visits: we'll have an echo when we go for pre-cath clinic in october and that's it!!!!!!! echo/pre-cath, cath, fontan. that's the plan. asher's doing so well, we don't need to go back until the cath!!!!

in the meantime, asher's doing fantastically with his eating... when he does eat. and he's doing really well with swallowing. he drinks water perfectly without a problem. you've probably heard him (seriously, why are all my kids loud swallowers?!?! it's disgusting!!! grossest. sound. ever.) so i took him to see dr b about changing his feeding schedule so it only runs at night. my thought was that, with the pump only being off a few hours a day, he's not getting really hungry, so he doesn't want to eat. but i know he can now, so we changed his feeds to run at night, and naptime. and the change in him is incredible!! he's so happy now to just be a normal kid! no more backpack, other than when he wants to be like blithe and bram and pretend he's going to school. and that's a normal backpack, not the one for the pump! and it's filled with toys, instead of medical equipment!! it's so wonderful!!!

and there's something else to report... but what is it?? ah, yes, i remember. asher was sliding off my bed the other day, and his tube got caught on the top of the mattress while he kept sliding. so... back to IR. that was last monday morning. another week, another tube. and this replacement was so bad... i almost passed out again, and asher was crying that it was "too scary" and "hurts me" and trying so hard to get away. but we got the new tube in, and he got some stickers, and by the time we left the hospital he was happy again. that kid.

well, after that tube change, i decided that all this needs to change. i took him to see dr b (paeds) that afternoon to discuss his tube. namely this: i want to change it from GJ to G. (for those non-enteral-savvy-types: a G-tube goes directly into the stomach. feeds can be larger, and spaced several hours apart [bolus feeds]. asher was given a GJ-tube, which goes through the stomach, down through digestive tract and into the small bowel [jujenum]. this is the 2nd-to-last resort tube.)

so, a little history here: asher has always been tube-fed, since his diagnosis at 8 days old. he had an NG-tube for the first 9 months (naso-gastric: goes up the nose, down the throat, and into the stomach). this was due to his difficulty swallowing (dysphagia) and fatigue during feeds. at 9 months, he was given a GJ-tube, because of his severe reflux (which by then was causing apnea and failure to thrive) and the aspiration risk associated with his throat problems. now, a lot of asher's gastric issues were believed to be caused by some damage to his vagus nerve, which would have happened during his Glenn (open heart surgery - including aortic arch reconstruction, done at 6 months). this damage would take time to heal (1.5 to 3 years is the norm). and fyi, the GJ-tube is one of the "last resort" tubes. it is NOT one they do routinely, for a lot of reasons. but this is the only one that would really help asher, so it had to be done.

so, since getting his GJ-tube in September '07, asher's been on continuous feeds, which means that he is being fed 20 hours a day at first, then down to 18 hours, and now, 13 hours (thanks to overnight-only feeds and high cal formula).

but lately, since changing the feeds to nighttime only, asher has been making remarkable progress in his eating. in fact, last night at supper, he ate almost as much as bram! he's been eating really well, actually, with no aspiration issues, no reflux, no difficulty swallowing whatsoever. he still tires out from eating, though, so he is not yet able to eat enough to sustain himself, but he's getting there! (and that's a cardiac issue, not gastric, so who knows if that will ever change) but now we're at the point where he only needs the tube for meds and calories. which means....

tomorrow morning, asher and i go to london to consult with gastro about changing that tube. i'm sure they'll say yes, and it's just a matter of time before that pesky GJ-tube is just a distant memory. :) i'll post tomorrow and let you know how it all goes.

so that's our lives over the last couple months (at least as far as asher's stuff is concerned). sorry it was such a long post. i'll try to do better at staying on top of things here in the future. promise. :)

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