Ellie had her scheduled Short Bowel clinic appointment at Children’s today. When things are going well we have gone two months or more between clinic visits but with her ostomy misbehaving they wanted to see her after just one month this time.
The overall results from our visit is that everyone is still very pleased with her growth and development which as continued despite her ostomy issues over the last 4-6 weeks. Her weight and length are still right in the middle of the growth curves for her age which is very exciting for us.
Clinic is a series of meetings with different specialists that make up the Short Bowel Program (or Center for Advanced Intestinal Rehabilitation, CAIR as it is now known).
Today we met with six specialists. Everyone spent their time with us thinking and talking about why her ostomy is losing fluids like it is and thinking about a solution. It was like being in an episode of House with giggles.
Here’s what we know-Since we ran Ellie through a week of an antibiotic called Flagyl last week, we are pretty sure that it isn’t a bacterial infection. Since she doesn’t have any signs of a yeast infection like a rash, we are pretty sure that it isn’t yeast.
Which leaves her plumbing as the culprit.
The consensus among her surgeon and the short bowel team is that when Ellie’s ostomy was put in we wanted her bowel to shrink and get stronger while allowing some food to go down the ‘chimney’ to her colon to let her poop. All evidence so far shows that her small bowel is much smaller and stronger meaning that we have accomplished that goal.
Unfortunately this shrinking has changed the connection between her small bowel and colon. We think that the chimney has gotten smaller which makes it harder for food to go down. If all or most of that food that used to go down to become a nice poop for us is now going over the top of the chimney and out her ostomy, it would explain the high outputs and lack of poop very nicely.
To check out this theory and also rule out any blockages or other complications we are going to run another series of tests in the coming weeks to watch things move through and then maybe run an endoscope through her bowel to look around.
So we wait to schedule a set of tests and continue to watch Ellie very carefully with new instructions for rehydration that will make our lives a lot easier. The TPN guru told us that we can run her rehydration fluid (5% dextrose) as fast as we want which means that we can get all of Ellie’s fluids into her during her afternoon nap and avoid time attached to the IV pole.
Running kids and IV poles don't mix very well.