the surgeon called this afternoon

and answered my questions and told me about the plan, as it stands right now. here's what we discussed:

when he did the surgery last june, he trimmed the stent down so that it is flush with the wall of his heart. (now, i've seen asher's chest x-rays since then, and that stent looks almost identical to pre-glenn pictures, which means there's a huge piece in there still.) but he left it in, thinking it would be fairly benign, not causing many problems. but, apparently, he was wrong. a lot of scar tissue has developped around the stent material; also, the heart has grown and the stent has not, so it is now blocking the pulmonary veins. that's right, both of them. yikes!

well, this is an unusual problem (esp since not many kids have had the hybrid, and even fewer have gotten the stent, and even fewer still have it post-glenn, embedded in the wall), so they want to open it up for discussion at the cardiology conference on monday, but he and dr r are presenting asher for surgery very soon. the discussion would, like i said in a previous post, revolve more around "do we include the fontan at this point, to minimize the procedures? or do we just do this now, and leave the fontan for later, as planned?" either way, both he and dr r will be sticking to their guns on the timing issue: it must be done SOON. when i told him how asher has been doing lately (very pale/blue/grey, sweaty, irritable, puffy, vomitting, tired, short of breath, etc), he said that was good to know, since it confirms for him that this cannot wait.

the "good" news, though, was this (if you can call it that): he said that this would not be a big surgery.... compared to the one last june. he said that they would simply remove that part of the wall, not a big deal, they have ways of doing that ("i hope so!" i exclaimed, laughing. i don't think he quite understands how i can laugh in the midst of all this. i think i confuse him a wee bit). so, yeah, they're "just" going to remove the inside of the wall of asher's heart where the stent is now. i'm gonna be honest, a wave a nausea swept over me when he said "we'll just remove that part, we have ways of doing it." oh, here it comes again!

so, there you go. that's what he had to say. he added that if i have any more questions, to feel free to call, he's happy to help any way he can. i always forget how nice he is to parents. very approachable. you don't get that very often with surgeons. i like him.

let's see, what else can i say? well... today, asher's not doing so well. queezy and nauseous, almost vomited several times today, but it didn't come out. just went into his lungs. the usual. anything else? well, he's very pale/blue/grey today (i mean more so than usual), his breathing is fast, he's pretty tired and irritable, puffy, and sweaty! dear me! yuck. nurse v wasn't very impressed this afternoon with how he presented. on the other hand, no one seems to have told him how he's doing. he played most of the time that he was up this afternoon. he was even chipper and laughing at times. and that made her happy.

we're going to see (london) cardiology on monday morning, then dr b (paeds) on tuesday, we'll be talking to (toronto) cardiology on monday afternoon/evening. so he's well taken care of this coming week. and of course, the nurses are on call all weekend, and there's emerg, too, if we need to go in. but i think asher will be ok till monday, and then people will be checking him out.

so, that's asher today. i'll post monday, for sure, when we hear, and hopefully not before then. have a good weekend, and i'll talk to you soon. h