maintaining body temp and CPAP questions...

purplepuggles

jack has been maintaining his temp without the help of the heat in the isolette for 2 days now and has gained 2 ounces in those two days. yay! they may move him to a regular crib soon.

he also has figured out how to move his head to get the CPAP out. it kills me that he hates the CPAP so much - he cries when they put it back in. :-( they say he still needs it because of his spells. 

what point does he have to get to with the spells that they can take that out? i seem to get varying opinions from the nurses and am wondering what i can do or say about it. he has it out sometimes for 5-10 minutes at a time while we are there because they have to take it off to move him to our arms to hold him, and they let him take a little break. he hasn't had a spell doing that in the past few days...shouldn't this be an indication he might be able to have a chance off it? i just hate seeing him unhappy...he is totally different kiddo with the CPAP off...looks so much more relaxed. he even had his eyes open looking around and resting comfortably the past couple days.

TriciaJoy

I know it's awful. Robbie liked being on the vent more than CPAP. (he was intubated for 5 weeks and on CPAP for another 3)

It's kind of a combo of things. For us, it wasn't just about As & Bs, but also about how his lungs looked on X ray. The CPAP helps them take deeper breaths-expanding their lungs more.

Several times they'd pull him to cannula only to have his lungs look hazy again, have more spells and back to CPAP he'd go.

We also did a week or so of half and half- so he'd be on cannula for 4 hours and CPAP for 4. It gave his nose and face a little break..

 

purplepuggles

i guess i will just ask lots of questions today about it. i just feel so bad for him. he can't get comfortable with it on his face and his nose is sore :-( maybe the nurses or doctors will be able to make him more comfy or put my  mind at ease a bit. thanks!

TriciaJoy

If his nose is getting sore, maybe ask if they have one of the masks that doesn't go up their nose. It fits more over their nose. It has to be tighter, so it comes with its own set of drawbacks, but eventually, we got to 4 hours of each kind of mask, just to give his face a break, then his nose a break and so on.

It does get better.. it's SO hard to see them struggling and uncomfortable. They're going through so much and you just want to fix it. But they're doing what is truly best for them.

Even after everything with Robbie.. he came home w/o oxygen. NO ONE thought that was possible, but it did..