Impromptu Seattle journey

Wednesday evening we headed up to Seattle because a last minute cancellation at the hospital meant we could get in to see the doctor Henry has been referred to at Seattle Children's Hospital, which is where Grey's Anatomy hospital shots are filmed. (Not the whole show, of course, but shots of the buildings, etc.) Anyway, Thursday morning we met with Dr. Shimamura and she spoke with us about Henry's history, shared her thoughts on how to proceed, and examined Henry. Most of what she had to say we had already heard before because she spoke with Henry's doc at OHSU several months ago. She's the doctor that came up with two additional tests we're now having done. One, a genetic test for Shwachman-Diamond Syndrome - earlier, less invasive tests for this have been negative. The other, a test to look for defective telomerase production found in the disease dyskeratosis congenita. Whew. That's a mouthful. She also questioned whether or not Henry had been seen by an immunologist (he hasn't), which may be our next step if the current tests don't answer the "What's the cause of Henry's neutropenia?" question.

 

With Henry doing so well, it's been easy to pack concerns about his health away. But winter is coming and he'll be in daycare so we expect this cold season to be a dandy one. It'll be a challenge to keep from panicking every time his fever gets a bit too high or we have to rush him to the E.R. because the on-call pedatric hematologist oncologist wants to check him out because his fever is too high (for the uninitiated, the neutropenic kids have to call in when their fevers hit 100.4. Folks, that ain't all that high so we can pretty much count on there being many, many calls.) All this to say, that I highly recommend having a totally healthy kid if at all possible.