Saturday, April 19, 2008

back so soon?

why, yes, yes we are! :)

asher did amazingly well with his cath yesterday! so much so, in fact, that he didn't need the room they had already booked for him "just in case." i'll admit, even i figured he'd be there at least one night. in fact, i was packed for several days! but, he did great, and we came home last night.

but i'll start at the beginning.

we arrived at SickKids for 8am. and for those who say SickKids in impersonal, a little story. and remember, we haven't been to clinic there since July. well, i handed the secretary asher's cards, and she says, "wow! i haven't seen you guys in a while! how are you doing?" that's right, the secretary remembered us. later, when we were waiting to meet with the fellow, one of the dietitians (sarah) spotted us and came right over and she and i must have chatted for about 10 minutes! we also saw paula in the cath lab on her way to a meeting, but she came right over and we talked for a few minutes, too. it was nice to see these people again, and to know that they remembered us and care about how asher's doing. but back to the days.

pre-cath clinic. first up: the ECG. ed went in with him, and i stood out in the hall chatting with the research nurse, sveta. at one point, one of the cardio's (dr froj) walked past us in the hall, and saw me, stopped, and came to chat. that didn't last long, though, since he basically plowed right past me asking "where's asher?" needless to say, he was pleasantly surprised by his size! this doc is not asher's doc, but he was the first one we talked to way back when asher first got sick, that first night. he did the first echo at SickKids in CCCU, explained asher's condition to us, went through our options with us a bit. he still remembers that night. and since then, he's kind of been following asher, keeping track of his progress. and as a coincidence, he's like our toronto version of dr buffo: not asher's doc, but seems to be the one on whenever asher's admitted there. funny how that works out, eh? (he's the one who asked, in the middle of an echo, "so, where'd you get the name Asher?" and was surprised when i knew all about my son's name. but really, would anyone give their child the name Ben-Oni without knowing what it meant and where it came from? i mean, really! lol) anyway... so that's the ECG.

then off to bloodwork. so much bloodwork. but that nurse needs to follow asher wherever he goes, but she got 15 mLs from one poke! fantastic! usually it takes at least 2 or 3 (asher's a very hard poke, his veins are all tiny, scarred and hiding now). but when she was done, asher only wanted daddy (mommy had been the one holding him down).

then, off the x-ray. now, for those who've never needed to take their baby in for a chest x-ray, let me describe it as best i can: there's a square, wooden table, with a hole in the middle. in that hole is a plastic bicycle seat. the baby sits on the seat, and then mom holds babe's arms up over his head, while the tech brings 2 tall, clear sheets of molded plastic and squeezes them around him. this forms a very tight tube around the baby, so he's upright and can't move. it's fastened tightly. at this point, the tech moves the table (which is on wheels) in front of the lead screen thing, for one picture. once it's done, they turn babe 90 degrees (the tube can spin) and get the side shot. and yes, the whole time, babe is crying. in fact, they need babe to cry, because that opens up the lungs and they get really good pictures. i made ed take him in for his x-ray. i always do it at 3 hospitals. ed has never taken him in for that. it's his turn. asher cuddled with me when they came back out.

then came the meetings with the nurse and the cath lab fellow. nurse went over the schedule for feeds, when to arrive, what time we were scheduled for, that sort of thing. the details. then we talked to the fellow. he went through the rest of the plan. they were going to coil off those collaterals that are causing problems, balloon his pulmonary arteries and stent them, if needed. they'd know once they got in there. they were also going to take a look around, take some pictures, check pressures, that sort of thing. then we signed the consent form.

so that was clinic. after that, we had lunch, and wandered downtown toronto for a while before checking into the hotel (btw: if you're a CAA member, there's a discount rate at the Delta. i think we paid $162 for thursday night. much nicer than the regular rate for our room: $500 or so per night!) we went to the World's Biggest Book Store and bought stuff to read. ed bought a book! i was so excited! (well, i bought books, too, duh, but i always buy books. i don't remember the last time ed bought a book! very exciting!)

ok, night at the hotel, back to the hospital for 7:30am. there, they checked asher's vitals, marked the pulses in his feet (so they know where to look afterward, and they'll know right away if the pulses are gone - a potential risk with cath procedures). i bathed him and got him into his gown and he played and played and played. then before he went in, we met with the anaesthesiologist (who remembered asher from june) and dr benson. dr benson said, and i quote: "we're not going to do anything today. we're just going to look around, check pressures, take some pictures, but we're not going to do anything. we should be done around, 11 or 11:30."

and they were. he talked to us afterward, and, as asher's docs and i all knew, they saw that one of the pulmonary veins is "severely" blocked and needs to be dealt with relatively soon. they know how to do that sort of thing, but he'll be talking with asher's cardiologist and surgeon and they'll figure out the plan now. we should hear fairly soon with a date. (you'll know when i know.) but it has to be done, and yes, it's open heart surgery. we also talked to the anaesthesiologist afterward, and he said that he had suctioned a lot of stuff out of asher's lungs, lots of mucous and puss, he thinks asher may have had a lung infection at one point and no one caught it. i'm not surprised, he's been aspirating so much reflux and food (in english: so much food and stomach acid has been going down into his lungs) lately, of course there would be stuff in there! but asher's breathing is now much better, not as laboured, still quite fast, but much better!

one bit of encouraging news: when we were talking with dr benson after the cath, he said that asher has already been through so much and made it through so many big hurdles, he should do pretty well with the upcoming surgery. it's not as big as the last one, in june. he's reasonably confident in asher. he commented on how strong asher is. (but it's still open heart surgery, and this is asher, and he has a reputation at 3 hospitals for complicating the simplest things. but it gives us some hope, at least.)

once asher woke up, and they gave him a bit of morphine, he was back to his usual self in a few hours. we were discharged at 3:30, and we got home around 7:30 last night. (friday night rush hour on the 401. ugh!). so that's that.

all in all, an eventful, stressful, llllloooooonnnnnnnggggg couple of days, with some mixed news at the end. but we're happy to be home (with asher! woohoo!). and now we wait for our surgery date. this part sucks.

anyway, that's that for now. ttys! h


Baby Seaton and family said...

I've been thinking about Asher these past few days and am so glad things went well... seeing as there was nothing new that you weren't expecting! Dr Benson is right though! Asher is strong!

Don't Taste The Cat & Other Fine Mommy Moments said...

That's great news Heather! I was thinking about Asher all day yesterday and hoping things went smoothly. So glad you got to come home too! Wonderful news and I just know he will do great with his upcoming surgery as he is a strong boy with an even stronger mommy!