Sunday, January 15, 2017

Many tests

Here we are starting 2017 at Hershey on January 3. Max and I stayed overnight for his sleep study. But first, I needed pulmonary testing, and a CPK level.  Here's my view from the pulmonary booth. I had 70% diffusion capacity (?) -so I'm on the low end of normal.

 Here we are in the blood lab. My CPK came back low, just like Max's. I am glad for that because it's right in line with our RYR1 (I bet if it had been really high they'd run some more tests.)
 We went to the outlets and then out to Fuddrucker's.
 And then he started the sleep study. It was really hard to get to sleep with all this stuff. And with people *watching* you. We are still waiting on the results of this a couple weeks later.
 We followed up at the end of the week with his lung doctor. The doctor ordered a 6 minute walk test to see if Max needs supplemental oxygen! (I bought my own pulse ox and he has good numbers with me.) He said to keep on the current Flovent and Albuterol and come in with every cold. He'll be on steroids if he gets a cold:(. We're waiting to hear on the sleep study to see if he needs BiPap.