We're Settled In

We're settled into our room and got set in the South tower of CHOP. We got a private room (YEAH!) and have a litany of specialists heading in to evaluate Jayden. Thia is going to be brief because it has been an extremely long day, but Jayden is doing his first feeds. They are doing NG feedings (not through his stomach unless they have to do this more long-term) and they are just doing it at night. Jim and I will learn how to insert the tubes and set up his feedings later, but the nurses just took care of it tonight.

They sent off for a ton of blood work and he has been seen by the geneticist, two pulmonologists, respiratory therapies and GI specialist. He was also taken to get some more xrays completed.

Tomorrow they will be collecting stool samples and he will be sent off for a CT scan. He may also have a lymph node biopsy, but a lot will depend on his blood work ups.

A funny note: one of the pulmonologist came in to see him (the pulmonologist on rounds) and was talking to us about lymphactasia (sp?), another rare condition he thinks is worth looking into. We talked about the day and this new idea and then we talked with him about Shwachman Diamond's Syndrome (SDS).

He said, "Well Dr. K gets a bottle of champagne if it's SDS and I get a bottle of champagne if it's lymphactasia." Jim and I looked at each other and burst out laughing. (Dr. K is normal his pulmonolgist). At least we know we're providing a bit of entertainment here.

Dr. Coren said they do fine with the normal kids here, but what they really love are the puzzles like Jayden, who are a lot more complicated to figure out. Jim said at least we're adding to their knowledge and expertise:).

Ok - good night and more info tomorrow.