, Re: When do you tune-up?

July 7, 2003

Hi ,

We love Dr. stein, he is kinda gruff sometimes, but he is real down to

earth with us. didnt start the screaming thing until about 2 visits ago,

now you would think the light to look in the nose and ears was some kind of

horrible creature. We had Dr. Weiner during one of our hospital stays, and we

have talked to almost all of the docs at one point or another. Drs. Clayton,

Scanlon, Arens, Panitch (he was the one on when was diagnosed, I didnt

like him at first, like it was his fault my son had CF, I think he is a neat

guy now though). I dont think I have found one of the docs that I dont like

yet, although I have had my not-so-likeable moments with a fellow here and

there, and definately have had a time with a few not so likeable residents.

We go back to clinic in August, if the cough gets better that is.

Just a question, but is your the little one that has the imaginary

baby sister that sits at the nurses station????

Gotta go get ready for work, have a great day.

, mommy of 4, almost 4 with CF

July 8, 2003

Hi ,

Maybe I am one and the same, wouldnt that be funny??? I love the names,

especially Shoo Wawa, thats cute.

Wonder if the resident from another planet was the same one we had, wouldnt

shock me.

As for Dr. Mayer and his study, I could only wish to have his patience. How

many times do you think he has read Green Eggs and Ham?? Almost has the

words memorized. Hanna was great with when he was diagnosed, I

havent

talked to her in a while, I guess that is a good thing.

Did you say that has a g-tube? had his placed about 1 1/2 years

ago, had a nissen done then too, but that has slipped since then, so we are

back on Reglan, Bethenachol and Zantac, thank God for g-tubes, he picks and

chooses what ones he will take by mouth and what ones go right to the tube.

I think I would have put the NG tube down the residents nose for an ounce of

food, I sometimes think that they think our kids are some kind of experimental

play thing for them to use. One time was down in IR for his picc line

placement. The nurse was talking to another nurse and referred to as

" the MRSA " , oooohhhhh did I get mad, had to remind her that had a name

and that it wasnt MRSA, and that he was my little boy and would be treated as

such. She apologized, but that didnt help at the time. Now I just make sure

they call him by name and not by whatever it is he has cultured at the time.

Can you imagine, " hey, Pseudomonas, come here " I think they need to incorporate

a course in human beings, especially kids in their nursing courses.

Oh well, have rambled long enough, and I hear tearing something apart

upstairs so I better run. Will talk to you later.

July 8, 2003

,

Dr Clayton!!!!! That is the one who's name I couldn't think of. We like him.

A momentary case of brain block! lol

I'll tell ya, I had a bad moment with a fellow during 's first hospital

stay at dx. wouldn't drink her bottle or eat much of anything so we were

very worried, but she was eating a bit more each day. Well, the dietitian has

left word that she wanted to be up to x amount of ounces by Saturday.

She was one ounce short, so on Sunday the resident in question (who was very

cold with -that may have had to do with the constant screaming though)

decided that she was going to have a ng tube feed for that one ounce. I told

him in no uncertain terms " NO way! we are not putting her through that for one

ounce, she has been put through enough in the last week and a half. " He went

and ordered it anyway!!!! When the nurse came into the room in the middle of

the night to take to the " treatment room " I asked " why? " - " For her NG

tube feed " I was told. I again said NO way! I explained the situation to the

nurse and she asked me if I was joking! an NG feed for 1 oz. They don't

normally do that! She said that she wouldn't let them do it to her kid either

for such a small amount! Anyway, when Hanna, the dietitian came in on

Monday she said she saw no reason for the ng feed either since was eating

a bit more everyday. All the other docs and nurses agreed with ME about this.

I did have another run in with the same resident when was quite ill - I

had to call after hours, so I guess he was cranky about having to answer my call

and He told me " She is gonna get colds just like any other kid, just give her

some Tylenol " I was HOT! I am one of those people who don't call after office

hours unless I feel that it's an emergency. Anyway, I spoke to Dr. Weiner the

next AM and he saw her immediately and admitted her, she was in crappy shape.

Now I'll tell you the ironic thing, and are now both participating

in this former jerk fellow's PFT study. Dr. Mayers has come a long way, hasn't

he? They all learn something about how to handle parents and kids after a

while. As much as it sucks, we are an important part of that education.

just got over a cough she had going on since April! As it turns out it

wasn't allergies as we all suspected. She was having Reflux again! back on

zantac and it was gone in a few days! She doesn't mind the light thing in her

ears. we always ask her if she is growing potatoes or carrots in there but she

doesn't like it up her nose.

and an imaginary baby sister? possibly Now we have a " baby brother "

doll. everywhere we go she brings him. She tells people that she has a baby

brother named- are you ready for this?- " Shoo Wawa " everyone thinks that I

really have a child named " Chihuahua " and I have to explain and show the doll.

She used to carry another baby named " Naked " . I suppose you can guess it's

state of dress. She also always has her blanket " Pooka " with her. Don't ask me

where she comes up with these names.

I am wondering if you are the same mom I met on a few occasions at CHOP. She

had a little boy about the same age, named too. HMMMMM

From: jacesjoggers@...

To: cfparents

Sent: Monday, July 07, 2003 4:38 PM

Subject: Re: , Re: When do you tune-up?

Hi ,

We love Dr. stein, he is kinda gruff sometimes, but he is real down to

earth with us. didnt start the screaming thing until about 2 visits

ago,

now you would think the light to look in the nose and ears was some kind of

horrible creature. We had Dr. Weiner during one of our hospital stays, and

we