Friday, July 17

Children's clinic appointments

We had the opportunity to spend the Thursday night at grandpa Bill and grandma Sue's home! Which makes an early morning first appointment at Children's SO much easier. Hannah and Nate, Alyssa (Hannah's friend), Tommy and I all drove down for a busy time. Dad and Liam spent the day at home together. Liam had a hearing test at Western today and his hearing is great!

Our first appointment was for a 'Sweat Chloride Test'. Tommy had an instrument strapped to each one of his forearms for eight minutes on each side which sent little prickly pulses into his skin to get it to sweat. Then the nurse taped film to each skin spot and we put a long sleeved jacket on Tommy and ran him around for 30 minutes to sweat. The doctors ordered this test to rule out Cystic Fibrosis. We will know early next week the results.

Next we went to Oto for a follow up to their placement of a second set of ear tubes. Perfect ears! And we had a perfect hearing test this week at WWU. Tommy has great hearing with the tubes in. Here is one of the professors at Western working with Tommy.

Tommy was asleep for his last appt of the day. This was his last visit with the Thymus study that we particpate in. During open heart surgery he received either part of his thymus, all of it, or none. The Thymus is usually discarded during open heart surgery for these lil guys, so it was exiciting to participate in a study to better inform docs of the benefits (or not) of that gland. We keep detailed journals of his illnesses, which as you can guess, are extensive. Colin and I feel our son didn't receive any portion of that gland back because his immunity is just a big goose egg. It will be interesting to hear over the years what Tommy received.
The participation involves a blood draw every six months. Usually, Tommy doesn't do well during these draws. But today, for the grand finale, his veins were there. And the lab tech that drew him is AMAZING! Remeber the name Hector if you need the best guy at Children's to draw your kid. We always combine the blood draw with other orders from docs so that Tommy isn't getting poked just for research. So, the orders from docs in bellingham were for Leukemia. Heavy sigh. We are all praying the results of the testing today are negative. We will hopefully rule out Cystic Fibrosis and Leukemia and next week just come to a hopeful conclusion that he has less immunity than other kids but no other illnesses. We are grateful for doctors to help us know more.

Tommy Adventures