Thursday, April 30, 2009
Monday, April 27, 2009
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."
Wednesday, April 22, 2009
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. :)