Thursday, December 06, 2007


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.

If all else fails and we can’t find a reason for the trouble there is always the possibility of simply reconnecting her to let all of that liquid go into her colon to be reabsorbed- the way her body is supposed to work. The doctors would prefer to resolve the output issue before reconnecting her, though, just in case there is another problem in the works.

We all agreed that we would be much more worried about her huge outputs if she weren’t so happy all of the time or acted even a little bit sick: But so far she is in great shape and it is more of a nuisance than anything right now. Ellie was in great spirits for the entire clinic including an ostomy bag change which gave the surgeons an opportunity to jam their fingers into her ostomy. Yeah really jammed it right in there and felt around. I guess if you are the one to make the ostomy, you can do whatever you want…..

During most clinic visits our appointments take up the whole afternoon. Today we needed to get blood drawn so we got there early and had an our free before our appointment so we took Ellie up to the inpatient floor to see another family with short bowel that is in Boston and just had surgery. While we were there we saw a lot of nurses that we had known while we were in the hospital and showed Ellie off to all of them who knew her when she was small and bald:

Seeing her curly haired and running a year later was good fun for them, I think.

Apparently the short bowel clinic is very busy these days and one of the great nurses told us that they call the floor Short Gut Alley since it is full of kids with short bowel. Knowing that all of those kids are likely on Omegaven is really encouraging.

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.


Susi said...

Thanks Ellie, Abby and Gib for taking the time to find our little guy, Camden, and his family today at the hospital. Tonya and Andy were really pleased. Letl's hope that the positive past couple of blogs keep coming that way for them. Also, want to here that Ellie's problems are resolving as well. Give her an extra hug from me in the morning. The Other Maine Nana.

Anonymous said...

The thought of how those nurses must have looked when they saw the princess made me smile. She is glorious and I'm sure she made their days. If I could have known last year when I was doing laps at Children's with Ellie that this is who she would be today, it would have been such a boost. I'm sure some of Little Miss Sunshine's magic rubbed off on those parents who saw her yesterday. I'd like a hit of that magic myself sometime soon! On her next clinic visit, she could wear her fairy costume.
Aunt Beth

Mikele said...

Oh, her piggies!!!!

Unknown said...

This is the first time I have ran into a site like this on Short Bowel. I found it tonight, after not looking on the internet for a while because of the depressing things that you read. I will continue to check out your website. I have shed a few tears here with in the last few hours of reading EVERYTHING on your site. I have a son with SBS he has 28cm of small bowel left. He is 3 years old, and is doing well. His SBS was caused by a mid-gut volvulus, with mutiple resections. He has been through 6 surgeries and is our little miracle. I wish you all the best with your Ellie, she is just adorable!!