Update

[Guest guest]

Hi all,

First I'd like to say thank you to all of you called me at the

hospital. It was great to hear some voices who could actually

understand what we are going through! I am sorry I haven't replied to

some of you, but I haven't had computer access. Chrissy told me there

were laptops available for checkout, but someone here told me that we

could not get one, because is in isolation. So, I am sneaking

on the nurse's computer outside my room. Also, if you have emailed me

directly, I will not be able to read your email. Even if I can get

online for a few minutes, I won't have access to my email in NY.

Now about .... Overall, he is feeling much better, but he still

cannot get off of oxygen. He has a significant history for pulmonary

problems, and he was on oxygen continuously for the first 3 years of

his life. I am praying that we are not back to this trend. So, I have

no idea when we will be discharged. We were supposed to fly back to

Florida last night, but I had to cancel the flight. Jet Blue was very

gracious in waiving the cancelation fees for us, and I didn't even ask

them to do this. We still have to pay the difference in airfare going

back. However, when he is discharged, I am uncertain about whether or

not he'll be able to get on a plane, because of his oxygen needs. I

hear that it will be warming up here in the next few days, so that is a

plus on our side. Right now it is 16 degrees here with a wind chill

near 0. Being from FL, we have never experienced temperatures like

this, and I don't think would do too well in it if he had to go

outside now.

We haven't seen Dr. H since we was admitted on Friday, but I

think she is coming in today. I finally got 's Aromasin last

night, but the hospital tells me they will not order GH. is on

Saizen. I think I have 1 or 2 days left of this (after skipping 2

nights of shots). The hospital also doesn't have 's formula.

He is on Nutren 1.5, and he is getting Peptamen 1.5. He hasn't had any

problems from this. It is just kind of strange to me that a hospital

can't get his meds or formula.

I have a touch of what has now too. I have had a fever nonstop

since yesterday, a pounding headache from time to time, and a cough &

chest congestion. This has been one vacation I won't soon forget.

Thanks again for everyone's concern!

Kim C.