Paige, sick and vest ugh

[Guest guest]

Hello everyone,

Paige is sick. She has a terrible cough, and we had a culture done

the other day. I am thinking it is just her MRSA again ....and we

will have to start septra. But her CF Specialty nurse has been ill,

and therefore is not at the clinic (otherwise known as The Greatest

Woman ALIVE)..we love her. And I am miserable, because Paige is

coughing. The cough is getting worse, but she is happy, and playing

one minute, then tired the next. She is coughing and coughing ....and

she is on prednisone...her face is red, I am assuming that is the

predisone. But it doesnt seem to be helping the cough at all.

So more then anything I wish we could talk to ..her nurse ugh.

The other nurses are very nice, but they dont seem to know about cf

as well. The doctor is wonderful, but very busy...and I am just

worried today. I wish the prednisone would help. Also, she is doing

Xopenex four times a day..also not a big improvement.

I dont think the girl got a very good culture on her,..there wasnt

much on it, but I am hoping its enough. I hate those gag cultures.

ALSO, vest issues. She will only do the vest until it turns off. In

other words, she searches for the black thing that you hold to get it

to go, and makes you let go, and says DONE..and if you try to

continue she freaks out completely. However she doesnt mind hand cpt

at all, so that is ok, but I would love to have her use her vest

more. Is there any way to " by pass " the holding the black thing to

make it work..and just have it turn on and stay on...so that it would

be " done " whe I SAY SO, and not little miss paige? Sigh. I am so

sleepy, today.

Paige just informed me that we are out of Hepsi " pepsi " and it is

time to " keen up houwse " ..hehehehehehehe

off I go!

Thanks Guys