Wednesday, January 7, 2009

getting you all caught up...

yes, i've been slacking a bit. ok, a lot. but i've been busy. mostly busy in emerg and clinics and trying to get someone cardiological to listen to me. here's the tale, but a shortened "in a nutshell" version:

asher has had an infection in his GJ-tube site for about 6 weeks now. first is it was treated with keflex, then with cipro, then they discovered that it's not bacterial after all, but rather yeast, so they prescribed an anti-yeast cream. after 10 days of that, and the site getting worse and worse every day, they prescribed an anti-yeast powder, and that seems to be working. but in the meantime....

asher's been having blue spells for about a month now. since 8 december, actually. we were sitting at the dinner table and he turned dark blue for no apparent reason. that was when cardio said in emerg that he must have caught a draft and "are you sure he's hypoplastic left?" yeah.

well, since then, he's been adding another cardiac symptom every few days. puffiness, shortness of breath, tachypnea (fast breathing, and yes, it's different than shortness of breath), lethargy, restlessness, reflux and vomiting, and so on. yup, basically, if it's a cardiac symptom, he's got it. lovely, no?

um, let me think... no. and so, i have had him in emerg roughly every week because of these symptoms, each time updating this list. so far, they have all blamed the symptoms on the infection (duh! his heart is working harder than usual because of this tube, so of course it's the infection. but in the meantime, HIS HEART, PEOPLE!! LOOK AT HIS HEART!!!), so they've been working on fixing the infection. which makes sense, but you kind of have to multitask with this kid of mine, because, um, he's kind of complicated. nothing is so simple as "fix the tube, then the heart." no. the heart has to be strong to get him through the infection. why do i get this, and no one else does?

and i know there are london heart moms reading this thinking, "why don't you just page the NP? she's good with this stuff. she'll listen." oh, yeah. brilliant. i did page her, as a matter of fact. and, well, she never returned my page. ever. yeah. SO not impressed over here.

well, i thought, if london's brushing us off, if we're falling through the cracks in london, i'm going over their heads. that's right, i called toronto. dr r (sick kids cardio) had handed us off to london back in the fall. but that was before asher got sick in november (and he hasn't been the same since!) and before this tube infection. and, long ago, dr r learned a valuable lesson: if i call and say asher's blue, it means he's blue. if i call and say he's sick, it means he's sick. and so, predictably, when i called her on monday morning, she listened. she actually said that the symptoms he's exhibiting now aren't normal for his stage, and he needs to come there for some testing. that's right. she listened. she said that she's going to get him in sometime in the next couple of weeks.

well, i got the call yesterday afternoon. asher's appointment is now booked for thursday, 22 january. sedate echo at 8am, doc at 11, then we'll get hooked up with a holter.

for those who don't know what a holter is, it's basically a long ECG. the heart's rhythms and whatever else (hey, i'm not a cardiologist yet, leave me alone! lol) is recorded over a long period of time, to see if anything funny is going on that's triggering these episodes. even though there's no apparent link between activity and the symptoms, something must be going on, so a holter should show it. i told her he has roughly 4 to 6 blue spells a day. so the holter, which is worn usually for 24 or 48 hours, will show what's going on. for more info about holter monitors, check out this link: it's from the sick kids website, and tells you everything you need to know.

frankly, i don't know what i'm hoping for here. do i hope they find something? i don't know. there are so many reasons for something to go wrong with his heart rhythm. the Glenn, the vagus nerve damage, the stent in the right atrium (oh, buffo would be impressed that i know that! lol). then there's just a potential general weakening of the heart from the fever in november and the long infection. on the other hand, we all know how asher likes to do things his own way. so it could just be him misbehaving. lol

i don't know. i'm just putting these ideas out there. in the meantime, that's what's going on in asher's little world. i'll try harder to keep the blog up-to-date from now on. meantime, i just have to tell you, i typed this post on my brand-new notebook. it's cute. it has hearts on it. yes. i am a marketer's dream. lol


Tanna said...

uh.... so to shine a little light on your up and coming trip to Toronto... Yale has clinic and echo that day too :) As much as we LOVE meeting up in hospitals... it is quite efficient... :)

Lets hope you get some answers and they aren't anything to lose sleep over.

Heather said...

yay!!! come find us!! :) he'll be the sleeping one in the sedate echo lab. then getting fitted with a holter. we'll find each other. lunch?

Corrie said...

Hi Heather,

I just read your post on the CHD support group page on Facebook. I just wanted to let you know that I'll be thinking of you and Asher today and sending nothing but positive thoughts and good vibes your way. As Tanna said, hopefully you can start getting some answers.