Monday, May 19, 2008

oops, my bad! :( this is going to be a long post - sorry

ok, so i just realized that i forgot to post about post-op clinic on friday. my bad. i'm so exhausted lately; i think i looked at the blog several times that day thinking, "i know i need to write something, but what?" yeah, i'm tired. anyway, here's the low-down on the post-op marathon.

first off, we did clinic in LONDON! woohoo! before they discharged us last week, i was afraid that they'd make us go to toronto for clinic, but nope! how much do i like dr benson? he's quirky, and i like him. :) anyway...

so, we get to clinic in london... late... as usual. (you know, when we go to toronto, we're always either on time or early. never late. we're often late in london, and always late for the paediatrician here in st thomas. it's like the closer the appt, the later i am. hmmm...) anyway, we got there, and i actually had a fun time, in some ways. i got to chat for a bit with kelly the secretary, who is no longer the secretary (friday was her last day), but we chatted for a while. then dr buffo saw us in the waiting room, and he came out to chat. after he asked how asher did with the surgery and all the details from that (including his little, "you know they'll have to take the rest out at some point, it can't stay there, you know" and my little "yes, i know" ugh, this is what our conversations are like every time we see each other. i complain, but i'll miss him), then we started chatting about the effects this life has on behavious in these kids, and how you can't really trust studies about that sort of thing, because of all the variables (that was actually an amusing conversation; i think he has the wrong idea about me, although i can totally understand why he thinks that). but i know longer think he thinks i'm an idiot, since he commented that asher's doing really well, and that the parents' IQ plays a large role in the child's well-being (as terrible as that sounds, it's usually true). then he told me that he hopes he won't see us in emerg before he leaves. he offered to give me his schedule so i'll know when he's on call. ha ha, very funny! although, it would be helpful. lol

then, off to echo. judy the tech was very impressed about the article dr caldarone sent me about the new technique he used to reconstruct asher's arch, and she made a copy for herself. (i read the article during the echo. it was fascinating. needless to say, i'm very interested in all that, given the issues asher's having with his arch right now: too much scar tissue, and it's getting really narrow - stenotic - in there, and the pressure's really high, which is not good. needs to be dealt with before the fontan.) anyway... echo was fine, but it was weird not to be blinded by the glare off the stent! at one point, i asked judy what she was looking at, and she said, "the left atrium." i didn't even recognize it! how bizarre! then the ECG... that was fine, too. so nothing exciting to report there.

then off to bloodwork and x-ray. they needed to check his heparin level, make sure it's therapeutic (blood clots in the atrium are bad: they lead to strokes and heart attacks and all kinds of nasty stuff). basically, this was the part of the day when we wandered the hospital for an hour or so, and asher cried a lot. oh, the joys of clinic.

then we came back, chatted some more in the waiting room with dr buffo, who swears his son will never get into thomas (asher was playing with tank engines on the floor) because it's too expensive (said the cardiologist) and then he crowned me cheapest person ever. he put up a valiant fight, but his mexican-ness just can't beat "scottish-mexican mennonite." lol so he conceded, and i told him that yes, the wooden thomases are ridiculously expensive, but the metal ones are much cheaper and just as fun. that's right, this is how often we're there, that we can just stand around and chat and joke like this. i'm going to miss it. maybe i'll make a trip out to winnipeg at some point. lol

then in to see liz. asher's sats were, well, i don't want to say beautiful, but 82% is higher than it's been in months! they were all impressed that he's (finally) so pink; it's a delightful change from pale/blue/grey. but they're not impressed by his blood pressures. the top numbers (systolics) were 133 and 122 in his right arm and left leg. in case you're wondering, that's way too high. the 133... yeah, that's about where mine is, and i'm an extremely stressed out adult! and they changed his captopril to enalapril, which does the same thing, but is only twice a day, not 3 times, so that's better for us. we like sleep, and so does he. so, thank-you, dr p, we like enalapril much better. liz wants to see us again next week for a BP check, and then at the beginning of june for echo and x-ray, making sure there's no clots before coming off enoxaparin. so, we'll get to see the docs at least a couple more times before they leave. that gives me some time to come up with something to give them. yikes! nothing like a little pressure, eh?

by the time we got home, it was almost 3:00, and we were late for respite. but, the nurse stayed, and i napped. asher played. then, when i came downstairs at 4:30, his tube was clogged. and i mean clogged! so much so, the only thing that would fix it, was to replace it. so back to london we traipsed. see, when we were in toronto, and asher was fluid restricted (due to puffiness), they weren't giving him his usual laxative, which is diluted in water. they gave him another one, which is, essentially, syrup, only thicker. and when i mentioned to them (in london) that asher had been refluxing and actually vomitted formula while we were in toronto, they said, "well, that's suspicious, isn't it?" the theory is that the tube got bumped or something during the surgery, and no one did anything about it in toronto. and why would they, really? it's not like he needs the tube to stay alive or anything. oh, no, wait a minute... that tube feeds him, so it is colossally important. but it's not a heart, so they don't care. (you think i'm joking, but ask any heart parent who's had to deal with toronto cardio. that's their attitude. truly. nice, eh?)

so, a marathon in cardiology, a new tube. 2 trips to london, and a nap. that was friday. hopefully, we won't have many more "daze" like that any time soon. sorry it took so long to post about all this. and so, to make up for it, a picture of asher, taken while i wrote all this. have a great day! :)

1 comment:

Diane said...

He's so cute and happy - you'd have no idea all the trouble he's going through, just looking at him.

Thanks for keeping us updated Heather!