update on

[Guest guest]

Well, 's feeding tube placement was postponed from Monday the 18th of

November, to Wednesday the 27th of November. That's right, the day before

Thanksgiving. She has a very bad upper respiratory infection and is

positive for P.A.. So rather than take a chance with general anesthesia,

we opted to wait until she clears up a bit. But, last night she spent the

night here with Gram and Grampy and poor thing woke up at about 1:30 with

such a bad coughing fit (lasted at least 20 minutes). She hardly could

take a breath without coughing. We tried to give her sips of water,

pounding on her back and having her sleep in a sitting position. She gets

so upset and cries for us to let her be so she can sleep. Of course she

can't due to the cough. I just try to comfort her along with all the above

mentioned things, but to no avail. It breaks my heart. I can only imagine

how my son and daughter- in- law feel. I only have to see her through it a

couple of times a week, as we try to give Mom and Dad a much needed break

and have the kids usually twice a week. She has me worried. You know, she

has had P.A. since last December and has not been able to get rid of

it. Almost a full year! She started with IV antibiotics, then to oral

antibiotics, Tobi, Ceflex, Z-max, but just can't shake it. Oh, course

along with this she has not been able to maintain any weight gain- thus the

feeding tube. But, will she ever be well enough to go through the

surgery?!! It is a snowball rolling out of control! Tomorrow she goes

back to clinic and perhaps back in hospital for treatment. She is so

sweet, never complains, bless her heart. She was so looking forward to

Thanksgiving. Loves family gatherings. We all decided that rather then

tell her that we won't have Thanksgiving on Thanksgiving day, we are

planning on having it after she is recovered enough to eat and enjoy

company. We don't want her to think we can't be together on a family

holiday because she is sick. It would make her feel so bad. She is so

grown-up sometimes carrying so much responsibility-on her on. Mom and Dad

are so brilliant and sensitive to 's feelings- they amaze me. All

this on their minds, along with a three year old son who also has health

problems(supra ventricular Tachycardia)each holding down jobs, the medical

bills-all that stuff you all deal with, too).

Wow...is this O.k. me going on and on? Just one thing ... any ideas or

approaches for night time coughing fits, and how about that extended P.A.

what's up with that?

Thanks for listening. I think I'm overtired after last night and this

emotional roller coaster we've been riding- sucks. My heart aches for my

little .

Oh, yes, one more thing... sorry...I notice someone is from Maine. Where

you from? e-mail me for a private chat, I'd just love it. We live in

Topsham. 30 minutes from Portland, Augusta and ton.

><(((( " >

Steve & Louise , Gram and Grampy to Princess 5WCF and a loving

heart and Stevie, three years old and her royal footman and loyal companion