Day 1 Update

All is well at Children's.

In fact, all is better than we thought going into the day.

Everything went as we expected and at about 5 this afternoon we were summoned into the recovery room by the GI specialist who is running Ellie's studies this week. He came to find us and tell us that she wanted her mom. Now.

So we went in to the recovery room and got her settled and learned the following things from the GI/bowel motility doctor in his words:

'She has most of her colon'. No kidding. the same kids who we assumed had only about 70% of her colon now has most of her colon. Considering that in some cases the colon can take on some of the function of her missing small bowel, this is great news and makes us even more optimistic about her gut adaptation.

'Her bowel looks good' Ah, words that we love to hear. Abby and I had tried to avoid thinking about what the doctor would see on the inside but hearing pink and good looking is always a good thing. That doesn't mean that it is working perfectly but on appearance it seems that there aren't any areas of dead or sick bowel in the length of her remaining small bowel.

'Some twists and turns at the top of her colon' Maybe the answer to the mystery of Ellie's lazy pooping. If there are kinks or turns or some other strange configuration of her colon up abouve, it might slow down the progression of stool through her colon.

All of these good words made our day but the proof will be tomorrow when the second half of her test gets under way. In addition to scoping her bowel the doctor left a bunch of new tubes in Ellie that will measure her bowel function tomorrow morning. Right now she has a catheter tube in the lower end of her colon, a catheter tube in her ostomy going up into her small bowel, a catheter going in her g-tube hole going through her stomach to her small bowel, a tube in her g-tube hole that works as a vent and a feeding port, and a central line. A helluva lot of tubes for little girl but she is still pretty dopey from the anesthesia so she has been pretty good about it so far.

Tomorrow's tests will take a long time and begin before breakfast for most people. I have to go to bed to get GUs fed and happy before going in for a 6AM start time.

We hope to have some new answers by this time tomorrow and who knows, maybe a plan for the next surgical step....