Today was a quick day, we had an appointment with gastroentronology, Dr. Putnum who was the first doctor back in September who thought Michael was misdiagnosed with Jeune’s and really had Shwachman Diamond Syndrome. I pointed that out to him today, that he was the one who started it all, and he said it was quite obvious and started to go off about the misdiagnosis and stopped himself. We saw him today as all of the doctor’s involved are concerned with Michael’s nutritional health and weight and he said that as things stand he doesn’t have the physical reserves to do all the tissue healing that will be necessary after the surgery. We had three choices: a) have a feeding tube placed down his nose, past his stomach and etc. into his large intestines–it couldn’t go into his stomach as risk of reflux compromising his already compromised airway was too high; b) surgically have a feeding tube placed into his side, again, bypassing the stomach and going down into the large intestine; or c) have a PICC line placed into his arm for IV nutritional support. We are going with the PICC line for a number of reasons: they want to do IV antibiotics for at least a month before surgery and they can use the PICC line for that, they can do his IVIG treatments through it rather than starting an IV every month, they can use it for an IV line at the hospital surgically, and it can remain in for months–which Dr. P felt was a good idea as he doesn’t feel that his nutritional/antibiotic issues are going to be short term after surgery.

So we are going to come back to Cincinnati next week sometime to have the PICC line placed and be in the hospital for a couple days to get the nutrition started and train me on using/caring for it. Michael seems okay with it, a little worried about it going in, but otherwise at the moment he is just glad he isn’t going to have a tube down his nose for 6 weeks (which he was dreading). I have mixed feelings about it (surprise surprise) just in the fact that he needs to have a line placed like that drives home all his extra issues leading into the surgery. But for the most part I am just glad that there are things they can do that will give him ANY edge up to get through the surgery/post surgery successfully.

Tomorrow we see Dr. Harris to discuss plans in regards to his immune/bone marrow issues going into surgery.

On a fun note, we went to the zoo afterwards with Amanda and Jayden (Jayden has SDS as well) and had a really lovely time with them. The kids said our zoo (Toledo Zoo) was better but that it was fun to go somewhere different. Although I have to say that their train ride is pretty cool and you can’t beat the white tigers and manatees! A couple pictures from before my camera died are on Flickr and Facebook.