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.

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: http://www.aboutkidshealth.ca/HeartConditions/Other-Tests.aspx?articleID=6582&categoryID=HC-nh2-11h 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