Thursday, November 26, 2009

what a week! aka, the full report

what a week, indeed! definitely had its ups and downs, but when does it not when asher's involved? and it all ended on an up-note, so i'm happy. tired, but happy. so, here we go.

like i said the other day, there was a mix-up in the dates of the cath, which meant that we made the long (and painfully early) trek to toronto a day early. ugh. but we did pre-cath clinic anyway on tuesday, got everything done (chest xray, bloodwork, ecg, echo, informed consent), and came home. i laughed about the informed consent because, in case you hadn't noticed, i could have signed it without talking to the fellow and it would still have been informed. LOL but legally we have to go over the details, risks/potential complications, so we did, i signed the form, and we came home. and asher spent the night at his dad's, while i got some rest (didn't get out of bed till almost noon on wednesday). so it wasn't a waste, other than financially.

anyway, we got up early again this morning, and headed off to toronto. and as soon as we pulled into the parking lot at sick kids, asher got ticked. "i no want go hopsital, mommy." "i'm sorry, honey, but we have to be here today." "no! i don't yike you, mommy." (yeah, that's his new thing. "i don't yike you." isn't it special. haha he pulled the same thing last night when i turned the light off in my bedroom. he turned his back to me, and the only thing he would say to me for 20 minutes was "i don't yike you." hey, at least he's honest. lol)

so up we went to the cath lab. we registered at 8:30, and settled ourselves in the waiting room. where we waited. and waited. and waited.

they took us back at 10:00, to get him ready for the cath. height (92 cm), weight (13.3 kg), sats (84%), BP (100/66, which is high for him anymore). antiseptic bath, fresh diaper, and the gown. he insisted on wearing the big one. and by "big," i mean the sleeves were at least 4" too long, he was tripping over the bottom, and the ties left it so big it was almost falling off his shoulders. LOL but on a day like today, you give the boy what he wants. lol

dr redington came in just past noon and talked with us. here's what he told us:
  1. they weren't going to do anything, just look around. basically, not the full pre-fontan, since they did that in february, and got a lot of the information they needed. but they needed to repeat the haemodynamic portion of the study (pressures in the heart and lungs), so it wouldn't take more than an hour or so.
  2. they were hoping to find that the pressures had improved, since this was the stumbling block last time. in february, asher needed the fontan, but his pressures were too high. so they hoped the therapy they started him on then (carvedilol and ramipril, instead of just enalapril) had succeeded. if it didn't, they'd have to start from scratch, figure out what to do, and get on it.
  3. he asked how asher's been lately. i told him that he's now short of breath, running out of energy and getting tired more quickly, and he was grey over the weekend. he looked at asher and said, "well, he is too big to be just a glenn anymore." translation: based on age and size alone, it's time for the fontan.
then the nurse came in, took asher into the cath lab, and we went for lunch.
the cath was complete in a little over an hour. dr redington came out, and said that asher's numbers had improved, and he looks like an excellent candidate for the fontan. dr russell will likely present asher in conference on monday, and they will hopefully do the fontan in the near future.
believe it or not, this is actually good news. asher needed the fontan 10 months ago, but they couldn't do it. but they can now, so this is wonderful.
for those who don't understand why OH surgery would be a good thing, this is the final stage of asher's surgical course. it is a planned surgery, in that we've known from the get-go that it was coming, and now asher is in the ideal position for it. once this surgery is done, he should remain stable (touch wood) with reasonable function for quite some time. he will still at some point require a transplant, but we're hopeful that the fontan will allow him to last a few more years before that becomes necessary.
so this is all very good news, and i'm (relatively) happy. so now we're just waiting for a phone call from dr russell next week with their decision. i'll post when i hear.


ChristophersHeart said...

Glad to hear things have improved pressure wise and he's clear for the Fontan! I look forward to seeing how pink he will be post Fontan :)

Do you think they will give you until after Christmas? To avoid another Christmas in the hospital? I hope so.

Heather said...

i hope so, too. i've already spent a christmas and a new year's at sick kids. frankly, i'd rather not start ANOTHER year in a hospital. it would be nice to have december at home. on the other hand, asher's recovery times have been getting shorter and shorter (3 weeks after the first, 10 days after the norwood/glenn, and 5 days after the hemi-coles) so who knows? maybe the fontan will be day surgery! LOL a mom can dream...