(Okay, so I got a bit creative and did some drawings to help me explain Ellie's bowel layout. I never claimed to be an artist, I just knew that I wouldn't be able to describe it well enough.)
Before Ellie’s surgery in November of 2006 she had a small bowel that was grossly dilated at 4cm wide and a colon that was rarely used and much smaller than her small bowel. Her small bowel had no motility and very bad bacterial overgrowth. See picture below:
Dr. Jennings intalled a large ostomy at the end of her small bowel to relieve the back pressure that was causing the dilation. He also straightened out the bowels, fixed some adhesions and then right before the small bowel ostomy left her body he reattached her colon. This means that even though she has an ostomy she is still able to use her colon. This is huge because this is how the human body absorbs water. See picture below:
Our goals were to relieve the back pressure on the small bowel, which would allow it to un-dilate and return to a normal size, and increase the usage of the large bowel. It worked.
She did great. She is still in the 75% for weight and height and has gained 10 pounds in the past year and is eating up a storm. We have found that she loves chicken, eggs, and believe it or not beef stew.
But.. you can't expect that when you create something and then shrink it that it will look or function the same. Anyone who has accidentally put a favorite sweater in the dryer will understand. When Ellie's small bowel went from grossly dilated to normal, the connections shrunk also. The end result is what we are dealing with now, and that is that the connection between the small and large bowel is too small causing all most, if not all, food and fluid to go out the ostomy and none down the colon. This created some serious dehydration issues.
So, now we look at what is next. And that is surgery with Dr. Jennings next Friday. The plan for the surgery is...
- Enlarge the connection between the small and large bowel.
- Make the opening of her ostomy smaller to force more food down her colon.
- Clean up the track that Ellie’s G-tube goes through. She has a considerable amount of gastric mucosa (lining of her stomach) rolling out of the opening. This makes it so fluid will always leak around the tube causing skin break down. Ellie will have her g-tube for a very long time so need to make sure it is going to work as well as it can.
This is what we are hoping for at the end of Friday:
- A colon that gets to see more food/liquid. This will enable her body will be to retrieve more of it's own water and so the amount of IV fluids she gets every night will decrease.
- Less output out of her ostomy.
- A stronger small bowel that can handle being completely reconnected to her colon with no ostomy down the road.
We had been talking with Dr. Jennings about making her ostomy smaller this spring, so we are just doing it a bit early with some extra stuff thrown in. We are not getting rid of the ostomy by reconnecting her small and large bowel completely, because there is too high if a chance that she will re-dilate back to where we were a year ago.
We are excited about this surgery and are ready for more poopy diapers and a smaller ostomy. We are not looking forward to the week or so she will be in the big house after the surgery, but we will manage. We have never been inpatients on 10East, it will be nice to see how it stands up to good old 8West.
The good news is that we are going to be able to do the bowel prep at home the week before the surgery. Much nicer than spending the night before the surgery doing it at the hospital. We are hoping this leaves us with a happier more rested baby, and parents, for the big day.
After all that, here are some fun pictures of Ellie from our great weekend in Vermont with the Leichter family.
Also we got all the results back from the cultures and biopsies from Ellie's day in the hospital for day surgery and all the results were normal. No overgrowth, and no allergies. Very good news.