Re:reply again/Sue YEAH

[Guest guest]

Sue,

Three big Cheers!!!!!

I am so happy for you and . It is nice to know that we have

that hospital. Fortunaly, a has done really well with the

Hanissian team, but it sure is nice to know that there is also

another center near us.

I never met Dr. Bob, you know I had my expereince with you know who,

and that was enough for us, I guess had we had Dr. Bob I probably

would have enother opinion of LeBonheur CF center.

Well, Iam glad you took the time to write and tell your experience,

maybe some people will have the courage to find a better place.

Love to all of you,

mom of a 9 wcf, Venanzio 6 nocf, Pepe 3 nocf

> Hey!!!! All is GREAT!!!!!

>

> Yes, we did change clinics. I hated to do it because we really

like Dr. Bob,

> but....

>

> We are going to UAB (University of Alabama at Birmingham) Childrens

Hospital.

> We see Dr. Lyrene and Dr. Makris and others but I am horrible with

names.

> WE LOVE IT!!!!!

>

> Can you believe we didn't see any interns!!! Boy, that is a huge

change for

> us. went for a regular clinic visit on May 20 and of

course we ended

> up staying for 2 weeks. That was okay, because as I am sure you

know, we go

> prepared to stay.

>

> They gave her vancomycin, tobramycin, and ceftazadine iv's. The

vanc caused

> a red mans reaction and she had to have benadryl but they changed

the time for

> the next dose and ran it over 2 hours instead of 30 minutes and it

worked

> much better.

>

> They made several changes from what we had been doing in Memphis.

One was

> they changed her back to Creon. We had been on Creon years ago and

had changed

> to Pancrecarb but she has lots of problems gaining weight and they

wanted to

> try Creon 20. They also started her on prevacid which is supposed

to get rid

> of extra acid in the stomach so the enzymes aren't absorbed too

early.

> Well..... let me tell you it is amazing. weighed 57 pounds

when she was

> admitted to the hospital. She weighed 64 after a two week hospital

stay. It took

> her two years to gain almost ten pounds. She has a feeding tube,

also. That

> stomach medicine and possibly the Creon have caused her to gain

more weight

> in a shorter period of time than she ever has.

>

> She is also on zithromax three days a week. She hasn't had any

problems from

> that either.

>

> I am so glad we changed clinics. We will miss Memphis, after all

we first

> started going there when was only 2 days old - 11 years

ago. We will

> miss all the staff and doctors that we have come to love as family

(Dr. Bob was

> a super doctor), but as I said before, we had to make a change.

Luckily for

> us this seems to have been the right thing to do.

>

> Since being in the hospital came in the middle of softball season

(never mind

> school was not out yet), had a heart to heart talk with the

doctors

> and explained how important softball is to her. Her coach called

her while she

> was in the hospital and told her she had been picked for all stars,

even

> though she only played 5 regular season games. We are in the

beginning of all

> stars now. She plays starting next weekend and won't finish til

school starts in

> August. She will get to play in the World Series in Olive Branch

and

> Southaven again this year. The doctor was very understanding. He

actually let her

> out 3 days early so she could play in her last two regular season

games. She

> was doing so much better.

>

> They even have physical therapy that the kids go to everyday. I am

a firm

> believer that fastpitch pitching has really developed upper body

strength and

> has helped her lungs. One major difference between the two

hopsitals was the

> infection control measures. Birmingham doesn't let the kids

socialize like we

> did in Memphis. I was not real happy about that at first, but I

totally

> understand the reasoning. Val had to wear a mask everytime she was

out of the room,

> as well as all the cystics.

>

> We did get to know some of the other families, but only from a

distance.

> There were definately no pizza parties late at night in the hall.

That is one

> thing we will miss from LeBonheur, but....

>

> Ok, I've rambled long enough, but I just wanted to let you know how

happy we

> are now. Try Birmingham if you ever decide you need a change. It

is

> wonderful to seem to have a different approach and it actually

seems to be working.

>

> Thanks for asking, and I wish you and yours health and happiness.

>

> Sue Pettit

> mom to (16 wocf), (12 wocf), and (11 wcf)

diagnosed at

> 8 days of age at LeBonheur Childrens Medical Center in Memphis,

Tennessee