Well normally they don't let you use your own equipment in the hospital, but tonight is an exception.
If you remember back to when we first extubated her and put her on a small bi-pap machine, she was having trouble. Then we put her on a fancier hospital machine and she did better. So we have still been using the fancy machine the rest of the time.
So one of my concerns was when we go home we will go back to a smaller home type machine. So the Dr.'s had me bring in her home machine. We had to have engineering approve it. Then the Dr.'s had to write a note saying it was OK. And now we have to do something called "rooming in". Basically it means I'm in charge. THe Dr's and nurses aren't going to take care of her for the night. I have to take care of her as if we were at home.
I don't anticipate any problems.
She did fantastic today. She stayed off her mask and on room air (no oxygen, no nasal canula) for the whole day. She sounded great.
She is now asleep on her own machine (which is sooooo much quieter than the hospital set-up). The hospital set-up includes something they call a whisper valve. It should be called a really annoying, air blowing in your face, noisy hole that doesn't need to be there.
It is an exhilation port. There has to be a place for the air you breath out to go or you would get carbon dioxide poisoning. But her home mask has a built in exhilation port. So on her own machine it is only noisy when her mask is leaking and that is good because then you know to adjust the mask. With the hospital way, it continually sounds like you have a leak, so you can't tell if you really have a leak, because all you hear is this constant leak.
Anyway it sounds way better in here tonight. (Quieter).
Well, good night...We'll check in --in the morning.
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