Let's see what's been going on here... The biggest thing right now is that we're working towards getting Peanut off the vent, as that would be ideal. But we also don't want her to get there only to find out that she needs some support at times. As of now, she's only on it at night. And even that it's for limited hours. They've been weaning her off that and using her trach collar more. The past 2 nights it was for her first 4 hours of sleep, and tonight they'll bump it up to 6 hours of sleeping.
For those that don't know, the trach collar has minimal oxygen support, it's basically like a small oxygen mask that you'd wear on your face - but it hangs in front of her trach. Right now the amount coming out is the same as room air. They want to see if she can tolerate that, then she may not even need the trach collar during the day. The vent actually hooks directly to her trach tube and gives support when she needs it. It detects when she's not breathing and will start doing that for her.
Other than that, she's moving along pretty well. We changed back to a smaller trach on Monday which gave her more talking abilities. And so far, not really much in the way of sleeping issues, which was our problem. They're going to order her the speaking valve today too, since she can squeak talk with it now, and talks pretty well if she just covers the hole. And it's really cute! But the valve will allow her to speak better.
We have no idea how much longer we're here, although Halloween is looking like an indoor, hospital setting here. Which is OK. I'm afraid to rush things and not be ready. After being her for almost 5 weeks, what's 2 more! So we'll probably be here until then, so they will directly transfer her via ambulance to CMH. And we were told that Halloween here is a pretty cool party day! Even her regular ped. Dr. S. said that she allows her isolation patients an hour outside of their room to enjoy it!! Gotta love a dr. who realizes that sometimes a kid still needs to be a kid!!
So we're here, we'll be here, and we're getting there. Oh, and even the geneticist who came by yesterday said that if Dr. W. knew of Peanut when they did their most recent ROHHAD study of those 15 kids, she really think Peanut would have been #16. She feels that Peanut fits quite a bit of the characteristics of this disorder.
And Nutty Buddy is doing better with school and such, but he's got a cold now. So he's missed the past 2 days, but he should be better to go tomorrow. We both got about 11-13 hours of sleep Monday night, and I guess we needed it!!
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