VALERIE IS HOME

[Guest guest]

WELCOME HOME!!!!!!

We got home Friday afternoon around 3 p.m., and not a minute too soon.

First, let me say thank you so much to everyone who sent the wonderful cards

and gifts to . This is the first hospital stay that has lasted this

long for her and this really helped her have something to look forward to each

morning. You are all such a blessing to us. THANK YOU!!!!!

There was so much going on those last few days, and I am not going to bore

you all with the details, but I just did not have much time to get on the

computer to let you all know what was happening. Let me just point out a few

things

we learned this trip:

BE SURE YOUR NURSE IS SYRINGE FLUSHING AT INSERT SITE PRIOR TO AND AFTER

VANCOMYCIN -- well, duh... aren't they always supposed to flush!!!! Okay, but if

you are using solusets (sp) and they are putting only vancomycin in this

soluset, some thought it was okay not to flush from the insert site, but this

created a crystalized solution in the soluset. Not only do they have to flush

with

saline (as normal, you know, release the clamp, fill to 20, etc.) but they

also are supposed to flush the insert site on a soluset with a syringe filled

with saline. Out of the 18 days we were receiving vancomycin (u do the math if

3xday) 5 (that I know of) times we got crystalized meds instead. They did not

give the crystalized meds. This is only our 2nd time to use this drug and

just thought I'd pass along this potentionally usefully information.

WHEN FIRST DIAGNOSED WITH CFRD, ALWAYS DO SEVERAL BLOOD SUGAR CHECKS WITH

BOTH YOUR AND THEIR MACHINES -- Ok, so I am new to this.... but several times

we

would get something like 85 and they would get something like 191. This is

too big of a difference, don't ya think? Actually, the diabetic educator said

this is a common problem. Well, what do we do? I still don't know. We did

lab draws to get the actual number, which was usually not even close to either

of the readings the machines had gotten. Oh, well....

Ok, now on to the important news....

VALERIE IS DOING MUCH BETTER!!!!

You would never know she even had cf if you looked at her now. Her final

PFT's were 94, 93. This is up from the 60-50 range going in. She had a

basketball game Saturday and played the first and last quarter. You could

really

tell she missed being around people her age. Two and one half weeks with mom is

nice (ha ha ha) but....

Three days before we were to go home, she started running temps of 101-102,

and a rash was present for about 3 days before that, off and on. One day the

doctor said it was roseolla (sp) measles, the next day it was a reaction to the

meds, the next it was an allergy to the soap used to wash the sheets (after

he found out we brought our soap and shampoo from home). We came home not

knowing. I initially thought it was a reaction to albuterol but they were

determined there was no such thing. We refused the albuterol for 3 treatments

and

there was no rash. We let them start the albuterol back and there was that rash

again. Well, to my uneducated mind I figured albuterol, right? Well,

not!!!! They changed from albuterol to something totally not even related and we

still had the rash and fever. Anyway, long story short -- after coming home she

has only had the rash once (very mild compared to hospital) and no fever.

Wonder what it was??????

THANKS TO EVERYONE FOR THE WONDERFULLY THOUGHTFULLY WAYS YOU LET VALERIE KNOW

SHE WAS IN YOUR THOUGHTS (and that other word we aren't supposed to use on

some of the cystic sites). WE WILL KEEP YOU UP TO DATE!!!!!

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, BUT HAVING VOICE CHANGES THAT ARE DRIVING ME MAD and

(12 wcf) into all sports, enjoying lots of friends, running full speed

and

doing all she can---diagnosed at 8 days of age at LeBonheur Childrens Medical

Center in Memphis, Tennessee, now seeing Doctors Lyrene and Makris (and lots of

other wonderful folks, of course) at UAB Children's Hospital in Birmingham,

Alabama

[Guest guest]

Great news! Welcome back Sue and welcome home !

love,

M