breathing issues

[Guest guest]

No advice, sorry. Just wanted you to know I am thinking of you guys. I hope she gets better really soon.

[Guest guest]

is having a hard time. She aspirated on Tues AM (we think)

and she's been having a real tough time. She used to aspirate all

the time and it followed a pattern- aspirate, cough and clear it,

wheeze an hour later, spike a temp 12-24 hours after that, then be

done with it after a day of nebs and CPT. This time it knocked her

on her butt. Her sats are running low 80s on room air when she's

asleep and she's not waking up to take a breath. We can get her to 93-

94 on 1 liter of O2 and even higher right after a nebulizer treatment

and CPT. Her gut has shut down and she's draining bile from the G

tube and around the J. I guess you could call this a crash? We've

never thought of it that way but maybe we should. I did give her

extra IV fluids last night and her temp and BP are better today. I

know her gut takes a while to recover from anything but I'm nervous

that her lungs will start having more problems too.

I am very proud that we have been able to meet her needs at home this

time. We have wonderful home nursing coverage and her docs are on

the same page (for once) about what we can do for her at home. It's

been scary but it's really the best for to be in her familiar

surroundings and away from hospital germies. The fewer people

touching her central line the better, too.

Sound familiar to anyone? What do you do to prevent breathing

problems or a long recovery phase? CPAP has been brought up. Does

anyone have experience with CPAP for a 2 year old? (Sounds about as

much fun as putting shoes on a cat!)

Thanks

Heidi, 's Mom