Re: 1-1-2006 h update

[Guest guest]

Jeni,

Glad to hear h and you guys are managing to hang in there. I

hate the " waiting game " we all seem to play with these nasty

respiratory infections...last one knocked me out for a month and i

kept wondering when it would get better. it did, in time.

We are all hoping and praying for a fast a quick recovery for her--

tell her the SMA group says HI!!!!

I'm not sure youve been able to try this or if it be ok for h,

but have you tried a mucus thinner such as something OTC that

contains active ingredient Guafenisen, or there is same form in Rx

called Humabid. The RT at my last hospital visit called this stuff

a miracle for individuals like us, and i must agree, as a faithful

user for 5+ yrs----i can be so junky and stats low, and then i take

that stuff and it turns it loose and comes up so much easier.

Sorry your new yrs holiday had to be spent in the hospital, but

maybe you can have a delayed celebration w/ h once she gets out,

which includes taco bell!

Take care and thanks for the updates,

>

> Well now I'm a bit frustrated. I allowed h to be off bi-pap

for about an hour last night to celebrate the new year. We HAD to

have a party in h's room! She did great and even managed to get

her sats up to 100% for the stroke of midnight. I do have pics but

no way to get them on here right now so those will come later.

> Anyway, after her midnight RT, she just knocked out. She was so

worn out that her sats were dipping into the LOW 80's! We tried

messing with her settings and it did help some. The doc, the night

nurse and I actually worked on this for over an hour. So now we've

increased her e-pap to 6 (, you're right about the pockets of

collapse) and I increased her i-time min. to .3 from .1 Both of

those changes seemed to help for a short time and then she'd start

dipping again. She seemed to be doing well after the e-pap change so

I laid down. Apparently she started dipping again in the middle of

the night and instead of waking me (which they have STRICT

instructions to do) some idiot turned an O2 canula on at max flow

and laid it in front of her face!!!!!!!!!! I just about lost it when

I got up and saw it. Her doctor even agrees with me about the O2

issue and yet there are a few who see a dip and automatically want

to give oxygen.

> Right now h's sats are good but I think I'm going to ask

them to bring in a capnograph and test her CO2 levels. Her color

just looks funny and she doesn't want to wake up.

> SMA Mafia ladies -- I know you've given me Weaver's e-mail

before, but can you give me his e-mail and phone # again? The doc is

willing to try a volume vent (actually he's willing to try anything

I want) but I want to talk to first and see if he has any

other ideas for us.

> Thanks!!!!!!!!!!!!!!!!!!!!

>

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> Love and Hugs

> Jeni

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