RE: Re: staph question/we go to Memphis

April 14, 2003

Let me guess, was it Tutor? Just wondering. We also go to the CF Clinic in

Memphis, TN. As of right now, I am seriously considering taking to

UAB CF Center in Birmingham, Alabama. It is one and half hours further away

but....

just got out of the hospital. Dr. Bob put her in before he had to go

on a vacation with his family. I understand that. I have absolutely no

problem with that. Tutor released her from the hospital, per Dr. Bob's

orders. I asked Dr. Tutor at the time was he aware that was being

sent home before the culture results were in. I wanted to be sure we were on

the right meds. Well, guess what. We were on the right meds for pseudomonis

(sp) but not MRSA. I did not even know had grown MRSA before she was

admitted to the hospital. The resident told me. They said Dr. Bob wanted to

give her vancomycin. I had a fit. I had heard so many negative things about

that drug I was scared to death. I wanted to try ANYTHING else first. Dr.

Bob called, we talked, and he agreed that we should do another culture since

the other culture was 3 months old. (or so we thought, we found out later it

was a year old, the dates were confused by whoever gave the results to Dr.

Bob). Anyway, to make a long story short, went back after being home

on home ivs 8 days or so, and Tutor had the picc line removed. I told him

she was not well. He said sometimes it takes a few days after taking the

meds. I told him she had to have an oral antibiotic after ivs. She always

has. She will get very sick if she doesn't. He told me he doesn't give oral

meds to pts. after ivs but he would call Dr. Bob. Dr. Bob was not in clinic

that day and was unavailable for any near appointments. That is another

problem I have with that clinic. They only do CF Clinic visits on certain

days. They only have two doctors, and they both rotate. We will not see

Tutor in clinic anymore because of the way he talked to a year or so

ago. She was 8 or 9 at the time and when we left clinic she was scared to

death. She thought she was fixing to die that day. We had agreed to see him

in the hospital this time and for the follow-up visit only because we had no

choice. I really like Dr. Bob and I don't think he is aware of how

frustrating it is to get to talk to him. I called the office last Friday and

left a message ( is never at her desk when I call except maybe one time

out of 10 and I don't call more than 4 times a year.) I wanted either Dr. to

call me back. I left my cell phone number and have had it with me ever

since. I have yet to receive a call back. I left the message that

is very sick, she is worse than she was before the hospital stay last month.

You would think they would call me back. I don't believe it is Dr. Bob. I

don't think he ever got the message. I finally called a local pediatrician

and explained what was going on and read him the culture results from our

last culture. I told him which antibiotic we wanted and he sent it. Dr.

Tutor was not concerned about the fact that we were treating with an

antibiotic she was resistant to for what she was growing. He just said we

could talk to Dr. Bob when we saw him. Well, Tutor told us to schedule an

appointment in a month. Well, of course we couldn't get in to see Dr. Bob

then. He is too booked up. The appointment we have is May 21. School gets

out May 22, and I am a teacher. I realize my child's health is very

important, that is one reason I have kept that appointment date for now. I

also know though, that if they weren't so booked up we would have been able

to be seen when we were supposed to and by the Doctor we choose. is

going to wait a month and a half after when she is supposed to see the

doctor.

So, am I right? Is it Tutor?

Just wondering....where are you taking your child now?

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

April 15, 2003