, Re: When do you tune-up?

[Guest guest]

Hi ,

I think if doctors would listen more to patients and parents they

would have their work cut out for them, plus they might learn a thing

or two. I used to be a passive parent, whatever the doctor said I

would do. But, for almost 9 years a could had been diagnosed and

I could have made her life a little easier, granted she is not

classic, but a child who has a perennial runny nose has to have

something other than allergies.

sounds like my 7 year old, he can come up with some names for

his toys and of course each and everyone of them has a name and each

and everyone of them I am suppost to remember :-).

Love to all of you,

mom of a 9 wcf, Venanzio 7 nocf, Pepe 3 nocf

> ,

> 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@a...

> 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

> 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

>

>

>