Re: Digest Number 486

[Guest guest]

Dear Debbie,

I do care that you are leaving the list. I really do. I also care very much

about . Maybe you can't see that or you are in too much pain to want to

see it. I have been there and done the REAL " life-threatening " thing with

Nettie. We have had 17 ICU admissions, 6 septic shocks, 30 pnemonias with

many requiring intubation. She was on Hospice from the time she was 3 till

she was 5. We have signed and reversed 3 DNR's as her condition deteriorated

and then improved. There have been the 6 months of home IV antibiotics, 2

years of high dose steriods for her lung infections and 7 (yeah 7!!!!!)

central lines and ports that we have lost. So, I do hear you!!! But I have

also seen my child improve with time and patience and good medicine. I have

witnessed her gain weight with the right formulas and her g-tube. She has

had 2 major hip surgeries to allow her to walk with braces and now she is

almost walking with no assistance at all. There is HOPE!! I am thrilled now

to talk about needle sticks and sinusitis because it is such a relief to not

be talking about planning her funeral. So I can appreciate your situation

and empathize with it. You obviously need to be with a group of people who

are experiencing what you and your little angle are. I hope you find it.

Sometimes we are alone in our suffering and there is nothing left to do but

to draw upon our own reserves and tough it out. I will pray for your

and will think positive thoughts for his improved health. Nettie is still

" fragile " . will also always be " fragile " but hopefully he will be a

happy and " healthier " " fragile " boy. For this I will pray.

Take care of yourself too.

Mommy to 10 yo Annette (IgG subclass 2 and 4 deficient, HIV+, developmental

delay, g-tube, asthma, lipodystrophy, spastic CP) and 4 yo (brain

tumor).

<A HREF= " http://www.pilink.com/ny/my2angels/index.htm " >Click here:

CaringBridge - my2angels</A>