As usual nothing went as planned today. I should know to expect the unexpected by now! We had to be at the hospital at 6:30. At 2:00, Alex was taken into surgery. It was a really long, hard morning. Hours of sitting around and waiting. We saw the immunologist, but she didn't give us any new information. The immunological disorder they thought he might have has been pushed to the back. At this point they don't think that is what is wrong. Dr. Koenig feels pretty strongly that Alex does have a mitochondrial disorder. Alex came through surgery and his MRI fine.
We finally got up to a room around 7:30. We started his feedings and within 15 minutes, his stomach was extremely distended. We were told to stop feedings. At the same time they realized that both his IV lines were blown and his ankle and leg were swollen quite a bit. So after 12 sticks in the OR, they had to call in the transport team to start another IV. The transport team is the top notch team for starting IV's in tricky patients. It took them 5 sticks and much digging. They finally got an IV started. The nurses and transport team are recommending that we do a port. We will discuss this with Dr. Koenig in the morning. We cannot continue to do this though. Everytime Alex needs an IV or a blood draw, he needs to be stuck multiple times.
Tomorrow we will see Dr. Koenig again as well as a dietician.
I will update again tomorrow.
Thanks for all your prayers.