Re: Clinic visit just venting

[Guest guest]

When Rebekah was seen in clinic in Syracuse she was seen by everyone in her

room as an infant and toddler except the x-ray we had to go there.They send a

person from the lab to do her port flush and they take her blood at the same

time.We have always seen the nutritionist in clinic never had to go elsewhere to

see them.Good Luck.BeckyB.-Mama to 8 kids -2w/cf-Nana to 2

[Guest guest]

Dear ,

Columbia at NY Presbyterian by chance? We've been patients there for three

aggravating years.

Paige (Mom to Jack, almost 3, with CF)

Clinic visit just venting

> Today I took my nine month old son for a routine visit to the CF

> clinic. We

> met with the Pulmo Doctor and the RT on the same floor. I like the

> both of

> them very much and it was a productive visit. Now here is where the

> fun

> begins. The hospital only has one dietitian that see's CF patients

> and she

> does not see them in the CF clinic the days my pulmo dr is there. How

> frustrating. Anyway we had to leave the clinic and go to a different

> part

> of the hospital. In fact we went to where the CF clinic was until the

> breakout of Burkholderia cepacia in October. Yes my hair was standing

> up on

> end the whole time I was there. Then we have to have blood drawn so

> it's to

> another part of the hosptial we go. I get there and there are not one

> or

> two but three children all sneezing, coughing and having running

> noses. At

> this point I have the blanket over my son out of fear of what is going

> around. I did not wait there i went down a hall and told them where

> Iwould

> be. Now is it me or what. You would think that a large hospital like

> that

> would have a one stop visit for kids with CF. Why not have several

> dietitians that work the clinics so the familys would not have to

> leave

> that department. Would it be to hard to have a floating Plebotomist

> (s?)

> that could come down to the clinic to do blood draws? I have only been

> dealing with CF for nine months now but I beleive my son is in more

> danger

> of catching something there then anywhere else. This is the year 2004

> one

> does not need to be Einstein to figure this one out!

> Do you think Im asking to much. Lets face it as an inpatient they

> dont

> make you go down to the lab....

> Ok had to get that off my chest. Oh yeah Ethan is doing well I have my

> fingers crossed that his culture does not grow anything!

> Thanks for being all ears.

> mom of 4 boys one with CF.

> .

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

[Guest guest]

,

Yes, I am always panicked at the hospital that our son Henry might catch

something. I can't relax either. Our synagis shot was approved this year, not

last, to be given by a nurse that comes to our home, for this exact reason.

Apparently they realized that sending the children at risk of RSV to a place

crawling with sick people was a bad idea. I don't really know if other things,

like blood work/labs are done through home visits as well, maybe others on the

list know.

As for the dietician, ours is in the clinic the days of our visit, but we were

told that the cf foundation funds this position and they can only afford one.

How important is it that you actually see the dietician? Maybe you could arrange

to talk to her on the phone instead. An outbreak that moved the cf clinic is

reason enough to give.

Good luck,