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. :)

some pics, to make the men-folk proud! LOL

oh, he's gonna kill me for this when he's older! LOL he put blithe's hat on this afternoon and was walking around looking so "pretty" i couldn't resist! ;) and, you'll note, it's two different hats! LOL this kid of mine!

and we're home! :)

yesterday we missed rounds, but that was when they decided that asher could be discharged.

asher responded very well to the new meds, with no major blips in his blood pressure. and his heart rate only shot up a couple times, so they're content to send us home.

mind you, we have to see cardio for weekly check-ups for the next 6 weeks, to check heart rate and BP. his carvedilol needs to be titrated up over the next several weeks to get him to a full dose, and they need to monitor him while they do that.

and to do that, we'll either have to make weekly trips to toronto, which, other than the cost involved, i don't mind. or... i have to call london and switch cardios. which i'm not looking forward to. ugh. ah, well. so it goes with asher!

as for the pic here, this was taken by our good friend SR in asher's happy place, the playroom on 4D. his favourite thing there is the Hungry Hungry Hippos. in fact, when i told him on thursday morning that we were going to SickKids, he said, "hippos!!!" and ran for his hoodie! LOL

so there you go, we're home, asher's now on 3 BP meds, and they're all working. and he's adorable. ;) have a great march break everyone! :)

Day 2

so, we started Ramapril last night. this is the ACE-Inhibitor that they're starting asher on instead of Enalapril. it should help him by strengthening the heart muscle and lowering the pressures in his heart. that's the goal. once those pressures come down, he'll be in a better place for the fontan.

today we'll be started on a beta blocker (but i don't remember which one). this will take 6 weeks to get us up to the full dose. it will also require weekly check-ups with cardiology to check heart rate and blood pressure.

one minor glitch in that, however, is that currently, we're being followed here, which would mean weekly trips here. so i'm going to be calling london cardio and seeing about switching docs there, and then i'll feel more comfortable dealing with them. because i really don't feel like driving all the way to toronto every week for HR and BP. i'd rather just drive to london. but given the choice between our current london cardio and dr russell, i'll take dr russell, thank-you very much.

ok, i should go. time is limited here at the moment, and i'm completely exhausted today. i'll post more when i know more. ttyl! :)

well, we're here....

that's about all i have to report so far! LOL

we got here safely, traffic was fine. we registered at the desk on 4D and asher ran straight into the playroom to play "hippos" (hungry hungry hippos). and......

for the first time ever......

i ordered lunch for Asher!!!!

and he ate it!!!!!

without problems!!!!!!

mac & cheese.

ok, i know, not the healthiest food there is, but hey, it's really just bonus calories right now anyway, and as long as he doesn't drown on it, i'm not being picky! lol

and next time you're on 4D, look around for a gorgeous pic of my gorgeous boy!!! :)

anyhoo... that's all for now. ttyl! :)

the plan, for now

dr russell (toronto cardio) called last night, and said that they had discussed asher in conference. apparently, the pressures in his heart are too high for the fontan right now, so they're going to start him on a couple meds: an ACE inhibitor, similar to enalapril (which he's on), but should help to strengthen the heart muscle, and a beta blocker. if these meds work the way they're expecting, asher should be ready for the fontan in the next few months. in the meantime, however, dr russell isn't comfortable starting him on the meds at home, so we're being admitted on thursday to 4D and staying the weekend. she just wants to keep an eye on him while they start this, for some observation, and so that if anything "asher-ish" happens, they can deal with it. i'll keep you posted.

a quick heads-up

dr russell called this afternoon. she's presenting asher in conference right now, and she'll call tonight with the plan. so stay tuned........