Balancing Act

Today, November 20 marks one year with an ostomy for Ellie.

It also marks a full year of bag changes for Gib and I. It is still no fun to do them, but we our choreography is well worked out by now and only takes 5 minutes if we are together.

Needless to say, November 20th this year was lots more fun than surgery day a year ago.

Winter showed up today with the first snow fall. Ellie had a good time chasing Gus around the yard and even got a taste of her first snow ball. She liked it when Karlene and I threw them at each other but, she just wanted to eat hers. Speaking of eating…. Elle is acting great and if we didn’t watch her numbers so closely we would have no idea something was wrong. Ellie still isn’t in balance with her numbers.

The current theory is that with one of the colds that she had in the end of October she also got a stomach bug. This is the leading theory because the stool cultures did not grow bacteria or yeast. So a GI virus is now the likely culprit and instead of vomiting she had high output.

Apparently when you have a GI bug you lose the lining of your intestines and that is why you get so sick and have to eat such bland foods. i.e. chicken noodle soup. But with short gut kids this lining is 2 to 3 times thicker than normal kids, so when it comes time to re-grow the lining after a stomach bug, it can take 6 weeks. We figure that we are now in week number 3. Darn.

To help her intestines recover we decreased the rate on her milk pump from 29cc/hr to 24cc/hr. But this hasn’t solved the problem. So, tomorrow we talk to the GI team of the short bowel clinic and probably drop her milk rate much lower and take on a new night of TPN. During all of this she has not lost weight, but she has not gained any weight either.

The big concern with her “numbers” being so off is dehydration. We have had to hook her up for supplemental hydration 5 times in the past three weeks. That is more than as many times as we have done in the past 11 months. By giving her supplemental hydration we are able to stay out of the hospital and keep her electrolytes where they are should be.

The fact that we have to reduce Ellie’s feeds and back off on the oral foods is very frustrating because Ellie has just started to show a real interest in real food, not baby food. She will try almost anything we put in front of her and will eat most of it. I was excited that with Thanksgiving coming up she might actually eat some of the dinner. But now that isn’t an option.

So after all that, I have to reassure you that she is doing fine. My sister Emily is in town with her family so we have been out and about with them. And all this mess hasn’t slowed Ellie down one bit! She has had a blast playing with Charlie and Olivia. We went into Boston to the Children’s Museum and to visit Uncle Fred. We have also played in the snow and been to the park a million times.To Give you an idea of how high our crazy lady has climbed in the maze at the Children's museum, that is her Aunt Emily and Uncle Marcus below her.