Friday, February 08, 2008

Clinic Update

Ellie had her first post-op visit to the short bowel clinic (or CAIR-Center for Advanced Intestinal Rehabilitation) yesterday. All went well and eveyone continues to be very happy with her progress.

Ellie continues to grow very well even though she isn't eating or drinking nearly as much as she did before her surgery. Officially she weighed in at her pre-surgery weight yesterday, 12.0 kg (26.4 pounds for you, Gramma). She is 34 1/2 inches long which puts her in the 50th percentile for weight and 80th percentile for height. We have seen a hiccup in her growth after prior surgeries so seeing this fast recovery is a good thing.

Ellie is pooping into her diaper 3-5 times a day now and her ostomy output has slowed significantly since we got aggressive in plugging her ostomy early this week. Even though the CAIR doctors didn't do the surgery and were strongly against it when we opted to change to Dr. Jennings, they are all very happy with the results of her ostomy overall and also the results of her recent revision to her ostomy.

We are going to keep increasing her pump feeding as long as she can tolerate them (no dumping or diarrhea) and see where we can from here. Ultimately we would like to have her colon working and use the ostomy just as a pressure relief valve. That will let us peel away TPN and let her colon do the job of rehydrating her.

The CAIR doctors had a decidedly pessimistic view of Ellie's biopsy results and chose to highlight the presence of old scarring of her liver rather than the miraculous halting of the progression of liver damage that has happened since she went on omegaven. This is in sharp contrast to the opinion of Dr. Puder who tells us that Ellie's biopsy may be the subject of a medical journal article...

The CAIR team continues to stress that we need to get her off of TPN to reduce the risks that come with TPN and the ticking time bomb that is a central line. We agree wholeheartedly that we want Ellie off of TPN but are not going to rush anything.

Ellie put on quite a show for the clinic and we wish that we had brought a camera to record her performance. For a while yesterday she was parading through the clinic in a onesie, a t-shirt and her metallic pink cowboy boots. She loves them and chooses them over all of her other shoes.

A rock star.

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