Today's Appointment (long)

[Guest guest]

Hi-

Kenzie's fine. Her CF Dr. checked her out again. Everything was

A-okay. He's still not pleased about her weight. She's 33 3/4 inches

and 26 1/2 pounds. He wants her at 30 lbs for when she gets sick and we

discussed that.

I gave him my questions (two pages) which he didn't have time to

answer then, except the first one. It was almost 5 pm by the time he

was able to get in to see us, and you could tell it had been a busy

day! He's going out of town and told me he'd take my questions on the

plane with him and fax me the answers when he gets back. That worked

for me. He didn't even flinch when I gave him an inch thick stack of

miscellaneous research papers, some pertaining to my questions (some

articles from you :-)) and some I just thought he'd enjoy (in case he

hadn't already seen them which I seriously doubt. This Dr. is a

voracious student of CF). Dr. Chipps is a great doctor for many

reasons. He's very dedicated and he truly cares about people. I

appreciate that he doesn't blow me off for being a High Maintenance

Mom. Instead, he really encourages me to be involved. His whole team's

like that.

In all fairness Jennie, I was the one wearing the " stupid " sign

here. I think I misunderstood what the pulm nurse was telling me about

cultures and bronchoscopies. What she was trying to tell me was that

while a bronchoscopy would be much more accurate, it required sedation

(:-(), the deep throat gagging culture would only reliably tell us if

Kenzie was culturing staph, but not reliably as to whether the staph was

in Kenzie's lungs. It's something like 20-30% reliability as to whether

the staph cultured came from the lungs (not the throat). And it's

harder to get sputum if they're not sick. So you could do the culture

when they are well, but in terms of staph presenting, the results

wouldn't be all that reliable as to whether it was in the lungs. If any

of you know of any study that proves this incorrect, I'd be interested

in reading it. What she said, made sense to me after hearing it the

second time. Dr. Chipps covered it again for me today.

Our pulm. nurse Casey, is very smart and on top of things, and she

actually called me the day after my visit to give me some more

information on questions I'd asked her. She even left her home phone

number if I wanted to talk more. She loves their CF patients and

participates in cystic fibrosis fundraisers, and she's really trying to

help me get my answers. I can't ask for more than that from anyone.

And sometimes I ask dumb questions, but they never make me feel dumb.

After Chase's genetic tests came back stating he didn't have CF and

wasn't even a carrier, I just had a hard time believing it. I couldn't

sleep I was so upset about it all. So at 10 o'clock one night I called

Dr. Chipps office to leave a message for him. He called me back in

about 10 minutes from his cell phone and we talked for quite awhile and

he really helped me understand Chase was okay. The extraordinary thing

to us about this was that Chase isn't Dr. Chipps patient, and we hadn't

even met Dr. Chipps yet! That human touch meant more to us than I can

possibly verbalize, and I know that whenever Kenzie needs him, he'll be

there for her. All he asks of us is that we aren't living in denial and

we are taking Kenzie's CF seriously.

So, I still don't have the answers to my many questions yet, but

I'm looking forward to that fax! Meanwhile, I'll keep reading. And

I'll sleep better tonight.

Thanks for caring!

Love...Sue