Friday, May 26, 2006

A possible new approach

Ellie's blood chemistry continues to move slowly in the wrong direction. This is to be expected if her menhaden treatment is following the pattern that other kids have followed but it has started Ellie's doctors talking about the possibility of surgery to correct the slow parts of her intestine, which continues to dilate with the pressure of fluid moving through but building up at the site of her repaired intestine (the anastomosis).

This talk of surgery is unsettling for Abby and I for a lot of reasons. First off, Ellie is not in bad shape right now so suregery is not an emergency for her. we understand the value of preparing us for the possibility of surgery in the future if it is necessary but we don't like to think baout it as a when situation. We understand that her bowel is not recivering as well as it could but time is a good thing and at this point we have some time.

The second reson the talk of surgery is unsettling is that the discussion of surgery has been limited to the new Serial Transverse Enteroplasty (STEP) surgery that was pioneered by Ellie's surgeon here at Children's to effectively legnthen her bowel. Our reservation about this surgery is that is is so new and hasn't been done on young indfants very often and so far the surgeons have only shown us limited information about the results of the STEP suregeries and these results have focused on esoteric results such as percentages of nutrition required by TPN, or growth curves assocuated with post STEP kids. There is very little information about complications from STEP like infections or extensive post-op hospital stays, two things that we ahve been warned about by parents whi have had STEP operations.

Further complicating this is the possibility that with 48 cm of small bowel tat Ellie may not need to have her bowel lengthed but may just need to have a chance to let is come down in size with time and a reduction in pressure. This is the approach that was used in short bowel kids before STEP and may be the ticket for Ellie. Maing it more attractive is the fact that if it were not successful, Ellie would essentially have the same legnth of bowel that she was born with and could theoretically be a candidate for another surgery, like STEP, in the future.

STEP is a one time shot. The next stop after STEP is a multivisceral transplant. No thanks.

Ellie's surgeon returns from a series of conferences next week. We are going to lay the cards on the table with him and get our concerns addressed as soon as possible. We have a lot of info and are given the responsibility of weighing what is best for Ellie.

We are continuing our rapid education in Pediatric Gastroenterology. Blah, blah blah, dilatation, blah, blah, blah, mesenteric blood supply......

It is dinner and a movie night for us, hospital style. A DVD Bewitched rented in the lobby, some takeout and some munchies from the cafeteria. But I've got my girls with me, which is way better than X-Men anyway.

Maybe a theatre tomorrow when Ellie is settled a bit more than she is tonight.

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