How the Evaluation in Cincinnati Went (from 7/18/14)

We got back from Cincinnati yesterday and I am still tired.  It was a very long day.  We got up bright and early to check out of the hotel and eat breakfast so that we would arrive to our first appointment on time.  We actually got there about a half an hour early, but that was the suggested time on the papers we received in the mail.  We've been to Cincinnati Children's hospital a few times before, so we were able to find our way around fairly easily.  Luckily, our first appointment took us back early. First we met with a geneticist who made sure that we understood Shade's CFTR mutations and how they affect his pancreas.  Then we went to registration for our visit with the surgeon, Dr. Nathan.  We had to fill out a lot of forms and wait for a while since we were early. There was a photographer there to kick off the start of their Pancreatitis Program.  Shade was cute for the camera and Dr. Nathan explained the TP-AIT surgery to us and that the team of doctors would discuss Shade's case and review all of his history and come to a decision about the best course of treatment.  Shade fell asleep while he was talking, despite having his Nintendo DS to play with.  He does not enjoy these kind of appointments, but he is usually pretty well-behaved.  After about an hour, we met with a Social Worker who talked to us about finances and the Ronald McDonald house and how we were all dealing with Shade's condition and the possibility of surgery.  Then we had to go back to registration and get ready for our appointment with the GI, Dr. Palermo.  We had to fill out even more forms and wait.  We were able to talk to Dr. Palermo about the possibilities for Shade's treatment and fill in some gaps on his history.  His nurse also asked some very thorough questions while Shade was impressed by the VHS tapes that were in the office.  He hadn't seen any before.  He made Mom and Dad feel old. LOL  He was such a trouper through all of it.  He was really ready for lunch towards the end, but he didn't interrupt the adults talking too often.  By this time we had already been at the hospital for several hours and we were all ready to go.  Unfortunately, we still had to get some blood drawn for labs and convince Shade to poop so that they could do a fecal elastase test.  Neither of these tasks was accomplished easily, but we did it!!  Shade got his favorite McDonald's afterwards as a reward for his behavior and for getting through those tests.  All together we spent about 6 hours at the hospital with no breaks.  I wish I had been better prepared with snacks and drinks, but I was under the impression we would only be there for about 4 hours.  Oh well, I know better for next time.  In their defense, the social worker did offer us some drinks and graham crackers, but we declined at that time because we thought we were almost done.  I didn't really learn anything new at these appointments, but hopefully the doctors did.  I should hear back from them in a couple of weeks and they will let us know how they recommend proceeding with Shade's health.