update on

[Guest guest]

Hello all. I haven't written in a while and thought I would catch you up on

what has been happening.

spent Thanksgiving in the hospital in Birmingham. That was okay with

us. That meant we would actually get to spend New Years at home. A first

for us in a while since she has been in the hospital on New Years the last

several years.

She only stayed in the hospital for 8 days. They gave her Tobramycin and

Timentin. The doctor said the MRSA was culturing abundant but he wanted to try

Timentin instead of Vancomycin since she had just had Vanc in May/June. We are

going back in the hospital in mid-January to get the Vanc. Timentin did not

get her PFT's back up enough he said. Also, she had a mid-line and they let

us come home with home iv's. She has had home iv's before, but we had so much

trouble with the line we finally ended up at the local ER (Birmingham is 3

hours away). The ER doctor was very honest and upfront from the beginning. He

said he knew next to nothing about CF and there was one nurse on duty who had

taken out and put in mid-lines but she wasn't comfortable with it so he took it

out for us. This is after he asked us what exactly did we need him to do.

He was extremely nice about it, kind, compasionate, etc. I sort of felt sorry

for him. I explained the complications we were having and told him

had pain the last two doses of Timentin so I felt we should take it out. She

only had 2 more days left of meds anyway. He agreed and took it out.

I called Birmingham the next day to let them know and Dr. Mackris wanted to

see her asap. We went the next day. He checked PFT's and told us to plan on a

hospital stay in January when we would do Vanc and probably have to do it

with a peripherial line instead of the picc or mid line. He also told us to

plan

on coming in during Spring Break to get a port.

During her hospital stay he was very concerned with her sugar levels. She

went from 99 to 268. The 268 was when a nurse checked it immediately after a

night feeding and she had received 2000 calories over 7 hours. Well, anyway we

are going to see another doctor and she will be diagnosed with CFRD. They

sent some papers for me to fill out prior to the visit. After doing some family

research, I have discovered that the brother I have with diabetes has type 1

and the 2 sisters my husband has with diabetes have type 2. I don't know if

this will make any difference with or not.

Anyway, that is where we are right now.

Hope everyone had a very Merry Christmas and sending wishes for a very Happy

New Year to all.

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, 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