update

[Guest guest]

hi everyone;

I am home for the night and hubby has taken over the hospital shift.

came through surgery well, but has had a rough time recovering

otherwise. They removed another 10cm of bowel and he has had more then his

ussual share of Pain. We are finally weaning him off the morphine after

going up rather then down all these days. He is walking around a bit with

help and his jejunostomy is starting to work. Unfortunately he is still

putting out alot through his NG tube and I am sure he will be in hospital

for awhile still. After having been down there or at work I am finally home

to get a nights sleep. I am tired of having to watch the nurses. I was gone

for ten minutes on wednesday and I found his nurse having done a cap change

totally unsterile. I was fuming. After spending your life keeping this kid

infectious free all I need is this person doing him in with her sloppy

technique. To top it off she was not to touch his line in the first place.

So much for them and keeping up with the care plan or even reading it. I

had a great nurse today, thank god. She said that the whole thing was wrong

and they were about to stop replacing his ostomy losses. Oh great now get

him into electrolyte trouble too. I am now given specific orders again that

no one does his TPN or central line care other then the parent. Gee I am so

sick of it all. I hope he speeds up recovery since its getting to be so

frustrating fighting for it all.

Going to bed with total exhaustion.

To all a happy thanksgiving and my prayers are with all of you guys

Beatrix Mom to 6 HD, short gut, TPN G tube eosiphilic gastro

enteritis