emerg update

so, as i said in the last post, i took asher to emerg tonight. i took him to our local hospital b/c his paeds in on call this week, so i felt comfortable taking him there.

well, with the waiting room packed, dozens of people waiting, asher was taken right in and put in his own room. the room, coincidentally, looked freakishly like an operating room, complete with giant light above the bed. and i say "freakishly" because, well, asher freaked out. he did NOT like that room. and he REALLY did not like that light. the one right above the bed. yeah. i have never seen him that upset in emerg before, which is saying something, given how much time he has spent in emerg.

anyhoo... the doc came in, and checked him out. i gave her a VERY brief history of asher (why do i keep forgetting about his looooooooooooong history of congestive heart failure? i mean, really, he's always right on the verge of it, and he's on so many meds for it. specifically, ALL his meds save domperidone treat it.) anyhoo.....

i guess this doc has never seen a toddler with CHF, so she was almost ready to admit him! LOL she asked me what i'd think about staying, and i said, "it's just CHF... i've dealt with that at home for 2.5 years. we usually just up his diurretic and go for follow-up. i don't really think he needs to be admitted for this." she didn't seem convinced.

we also went for an infection in his tube site. it's been getting uglier and uglier over the last week. and by now we all know about his wonky immune system, and how he really can't handle bacterial infections (or viral ones, either, but that's a whole other story). so, during my discussion with the doc about his tube site and such, i said, and i quote, "and i know the usual antibiotic for this type of infection is keflex, but it doesn't do anything for asher. we try it every time, and it never works." so she asked what usually does the trick, and i told her that cipro ends up being the med of choice.

so she went and discussed all of this with dr b. she said not to bother admitting him, but that she'd be on the ward in the morning, and if i wanted to bring him in to see her, that's cool. she also said, "listen to mom. keflex doesn't work. go with cipro instead." hooray for paeds!!!!! :)

so.... asher's home tonight, about to get his first dose of cipro, and i'm not sure, but he just might be going over to the hospital in the morning, just for a quick visit with "docter tollee" but i haven't decided yet for sure. but there you go. our evening. :)

and now, after re-reading what i've written, it sounds like my chat with the doc was, um, somewhat confrontational. it really wasn't. it was actually quite pleasant. in fact, she reminded me of my favourite emerg doc in london, so it was all good. :) i know this doc just hasn't dealt with anyone quite like asher before. and in the end, she listened to me, and that's a good thing. :)

i suppose he might have a point.... *might* have a point... i'm not saying he's right. but he might be. ;)

our dinner conversation tonight:

me: seriously, is there anything better than hash browns?!

asher: yes.

me: oh, really? what?

asher: me!!!

and on another quick note: i'm taking him to emerg tonight. his paeds is on call in town here, so we're going there. his tube site is looking pretty bad, and his nurse this morning recommended taking him to see the doc. and he's uber pale lately (see the pic), with blue spells, sweating, puffiness and SOB. :( so, i'm taking him in to get checked out, and i'll post sometime this weekend with the verdict.

hooray! more good news! go asher go!!!!

so, heard from cardio this week....

dr russell is very pleased with how well asher is responding to his new meds. so, her nurse told me yesterday that dr r wants to see asher again in clinic.... wait for it... IN 8 WEEKS!!!!!! MID-JULY!!!!!!!!!!!!! WOOHOO!!!!!!!!!!

and after that... the cath.

in... wait for it... OCTOBER!!!!!!!!!!!

and they'll book the fontan from there.

sign me up for more news like that! awesome!!!!!!!!!!

look at my boy, growing up so fast! :)

asher and "easter bunny" on his big boy bed
look at him, with his big elmo and the blanket i made blithe when she was a baby... and now she passed along to her baby brother. :)

how cute is this kid?!?!

so, i'm sitting here on the couch, chatting with a friend online. asher comes up up to me and sees my sock and says "sock off" and proceeds to pull off my sock. then, upon seeing my foot, he exclaims "toesies!!" and tickles me. ROFL

oh, anne, you're gonna weep! :)

so, asher's obsessed with the sandbox, the rain barrel, the big ball... basically, all things backyard, all things dirty, all things loved by boys. in fact, there have been times that he's woken up at 4am and gotten really ticked off with my mom and me because we wouldn't let him outside to play with "to-ees."

well, now he's learned the magical word... "outside." and as he was going in and out of the house this afternoon, he closed the door behind himself and said, "close the door."

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. :)