Hey everyone!!! Gosh I have missed you guys!!!!! I am so sorry to have
"disappeared" for a while but please know I have been thinking of you guys. It
got rough for a while with my issues with my back but I think I have been
"cured". The last steroid injection was Feb. 22nd and I have not had hardly
any
pain at all since then even though I have been sleeping on the chair/bed at
the hospital for 10 days. For some reason this time the chair/bed is not
bothering my back at all this trip.
Valerie is in the hospital, as you have gathered. She came in with PFT's in
the low 60's and we were told to not ask to go home before 14 days. Well,
long story short but she blew the Monday after being admitted on Wednesday and
got 86!!! However, after talking with several other parents whose kids also
went up a tremendous amount in their numbers we think it could have been a
fluke. Valerie has never improved that much in only 4 days. The doctor even
admitted he was leary of the results after seeing most all the kids who had
PFT's done that day improve that much. So, Valerie is supposed to blow again
this morning, and on a different machine. If she still is getting in the
80's I believe they may let us go home either today or tomorrow. Tomorrow will
be day 10 of antibiotics but day 11 of the admission this time. We didn't
get a room until late afternoon the day she was admitted and didn't get "hooked
up" until the midnight dose that night/morning so we don't get to count the
first day we were here as officially being here. She is doing much better
though, the hypertonic saline really does make a huge difference.
Dr. had taken her off it for a couple of weeks because she was having so
much coughing and the coughing did decrease but didn't completely go away so
that is why she was admitted. Apparently she wasn't too bad though because the
night before she was admitted she played in a softball and hit a triple and
was able to run the bases without too much trouble. She was very winded when
she got to third base but she would not give up the softball for anything as
you all know. :)
Also she is not on the vancomycin this trip, which is a first in the past 4
years. She seems to be responding so much better this time, too, so we are
hoping it is the new antibiotics. I do not know the names of two, which are
oral, but do plan to get it before we are dismissed so I can keep a record of
it. She is on a total of 5 antibiotics, 3 oral and 2 IV. The combination
really does seem to work well for her, she has never pulled her numbers up so
quickly before.
She is really hoping to get out today (Friday) because the school softball
tournament is Saturday and she wants to get home to play in it if she can.
However, she came in knowing she probably wouldn't get out in time to play in it
so if she does get to go home that will be a real unexpected "happy" for
her.
Our main issue is our insurance right now. We were contacted by our
insurance company last hospital stay with news that Valerie has only $30,000
left to
spend lifetime for hospital coverage and I happened to mention it to our
social worker here the other day. She called the insurance company and was
told
we had $275,000 left to spend. I asked her to please call back and request
that in writing. Haven't heard if she got it or not yet, but it would be
great if she did. I have applied for Medicaid/SSI for Valerie and still
waiting
to hear. That is a very long story, won't bore you with details. Hopefully
we will hear something soon, though. My husband got a letter at work
yesterday and since the company filed bankruptcy our prescriptions are going
up,
too. Even if Valerie has insurance left we won't be able to afford the
prescriptions which are going to $30 for generic and $40 for name brand. Can
you
imagine!!!! No way can we afford $40 for 5-6 fills a month and $30 for 3-4!!!!

Anyway, that is about all that is going on with us.
Hopefully I will be able to update and keep up with emails better now that I
can sit for longer periods at the computer.
Thank you for understanding!!! Love to all!!!!
Sue and Valerie Pettit
_www.curecf4valerie.com_ (http://www.curecf4valerie.com)



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