12-31 7am h update

[Guest guest]

We had a pretty uneventfull night. h managed 1 1/2 hours off bi-pap last

night but was pretty wiped out from it. She had some dips into the mid-80's that

were taken care of with her RT and then another cough session later. After that

she slept well with very few dips and none below 90%! She's still sounding

pretty junky between RT sessions but we've made a lot of progress. Today I am

working on convincing the docs to add mucomyst or pulmozyme to her nebs to help

with the increased secretions. I don't think it will be too hard because

everything I've asked of them so far has turned out to be beneficial We're

still waiting for our new cough assist (for those who don't know, ours failed

the PM check and can't be used in the hospital.) It is almost 6 years old so I

guess it was about time *LOL* I finally convinced them yesterday to leave a

cough assist in our room and actually allow me to use it. The general policy is

that an RT has to be the one to do it, so it took some talking. I

think what finally did it was me pointing out what a waste of their time it was

for them to have to come to h's room every time she needed to cough, and how

it wasn't good for her to have to wait for them to get there. They are pretty

impressed with how much she's cleared out since then. (My SMA family will

understand the big " DUH! " involved here *LOL*)

All things considered Miss h is moving along quite nicely. I'll be happy

to see her not quite so bi-pap dependent but I'm happy to say that she's getting

back to her feisty little self. Last night her favorite nurse (Miss Angie) asked

if there was anything she needed before bed. h put in an order for taco

bell! It's amusing considering she is still mostly on clear liquids and the only

solid food she's had in about 5 days has been one saltine cracker while she was

off bi-pap last night.

That's about it for now. We're expecting quite a few visitors today. Word has

gotten out among h's MDA camp friends and apparently they are going to come

in masses *LOL*

I'll probably update again around noon - hopefully to tell you that she's able

to sit up all the way (that one hasn't happened yet) and be off bi-pap for a

little longer!

Love and Hugs

Jeni