so, we were supposed to go home today. either tubeless or with a JP drain. instead...
we're staying put.
so far, since tuesday night, asher has drained over 500 ml from his chest. the chest x-ray this morning showed some improvement, but it's not gone, and liz wouldn't even call it "good." just "better." and it's still draining, albeit slowly. so the tube is staying in. we also have to get asher walking around and doing some deep breathing and coughing. that should help, especially because he has been splinting his right side (where the tube is). so that sucks.
then liz kept talking.
asher has been showing some weird rhythms while we've been here, and his heart rate is sitting in the 40s and 50s. not good. they've already talked to toronto, who said that asher should be on a holter for 24 hours, then they will discuss him in cardio conference on monday afternoon. at that time, we will either go home...
or to toronto...
for a pacemaker.
because this new rhythm he has is dangerous.
i'm completely heartbroken and terrified and confused. asher was asleep when they put the holter on, but he won't be happy when he wakes up. and he's really going to unimpressed when we make him walk around later today.
please pray/send good vibes/cross your crossables... whatever it is you do, please please do it now. thanks.
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3 comments:
This is so disappointing after the good news of his seeming quick recovery from the Fontan. I will be praying for you and for Asher, that you will both be able to deal emotionally with this setback; also, I will pray for his complete healing.
Heather, I'm so sorry to hear all this - I just checked in and found the last few posts. You must all be so disappointed, and desperate to get little Asher back home again as soon as possible.
I am hoping and praying that his drainage slows right down very soon, and that his funny arrhythmia sorts itself out too. (Charlie has intermittent heart block, so they're putting a pacemaker in when they do his Fontan next week. I know it seems terribly scary - I was really shocked when they said they were going to put one in - but all of the medics seem to think that it's a good thing for a Fontan patient.) But having said that, I am praying hard that Asher doesn't need one after all! Please know that, although we're far away, we're thinking of you every day. xxx
i'm so,so sorry to hear all of this heather. please know that our prayers are with all of you.
amanda
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