Halloween Hello

Halloween Hello

Well September has come and gone without a lack of excitement Stephanie
really did not bounce back from her August stay here at Sick Kids.
She has spent most of September with a distended tummy and in a lot of pain.

School has been a great distraction for Stephanie. She loves going, learning
and playing with her many friends. The days were long but she copes as
best as we can expect. Despite her g tube falling out on the second week of school
it was rather uneventful.

Finally on October 1st the pain was just to much and with yet another sleepless
night we decided to go to emerg. Stephanie was admitted for what we thought
would be a few days and we are still here 29 days later.

We thought this time maybe she had another actually mechanical obstruction again
because we after several days of bowel rest she was still not responding.
They have put a PICC line and put Stephanie on TPN and Lipids to try to keep her weight up. For some reason her motility has gotten much worse and we are really
unable to get any food to leave her stomach and go down to her intestines where
she really gets all of her nutrients. She is on a clear fluid diet and whenever we deviate from that and try full fluids the result is pain and distended tummy again. Whatever she puts in her mouth causes a distended tummy so we open her tube to vent her stomach and she loses all of her feed out of her tube plus more (bile).

At this point we are all very frustrated including her surgeon and more importantly so is Stephanie. She is trying so hard this hospital stay to cooperate with the everyday events of being in hospital, the daily diet changes, not being in her home, not seeing her family and friends and dealing the many different doctors in and out of her room daily.

My mother has come to help us with things at home- Thank God for her help!!!. Sydney and Danielle are doing as well as they possibly can right now. It is very difficult for them as well to not have Stephanie and I around during all of this. We really just want to have a normal family life. We have spent many occasions and holidays here at Sick Kids and for my dear Sydney Halloween is yet another without her sister and mom!

I am not sure how much longer we will be in hospital and we have come to terms with the whole idea of this being the only place for Stephanie right now. Please send us your positive thoughts and hope that we finally get to the bottom of all this sometime soon.


Denise