Wednesday, April 19, 2006

We heard from the doctors are Boston Children's yesterday by phone and it sounds like there may be a spot for Ellie in the Short Bowel Syndrome Program( link) at Children's and from the conversation yesterday we are encouraged. The doctor was very personable, giving us good feedback about Ellie's case (45 cm of small bowel is much better than say 25 or 30 cm, which he told me makes them cringe) and we have scheduled a time to talk Thursday or Friday to answer questions that Abby and I have before we think about arranging a transfer to Boston.

We are especially curious about the team approach in Boston that seems to have an integrated and dedicated team of doctors nurses and other professionals to deal with the SBS cases. Some times, it seems, at Yale that we are briefing the nurses on her relatively rare condition and are often the conduit for information between the surgery team who leads her care, and the neonatologist team who watches over her in the NICU. Being in a program with integrated staff would be great.

We are concerned about the new STEP surgery that they are doing in Boston and want to make sure that this surgery (which there is some debate about how effective it is) is a later course of action instead of a foregone conclusion for her treatment.

We want to check whether going to Children's will require that Ellie return to Children's for follow up care when she is released from the hospital. A trip to Boston for periodic follow up is okay, but if it needs to be weekly or more often, Boston might be tough.

But reagrdless of these questions, we wnat what is best for Ellie and make a decision based on wat is best for her. Talk about a heavy choice for a guy who can take weeks to buy shoes and hours to choose an ice cream flavor.


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