I am so sorry I didn't update yesterday. I am just so tired. And my brain is going crazy trying to digest all the information we have received this week. I leave here this week feeling like we finally have a pretty good handle on things. Dr. Koenig is the most understanding, compassionate, knowledgeable doctor we have ever had the opportunity to meet.
He managed to make things interesting again yesterday. We were finally able to leave the hospital around 4:00. We no sooner got back to the hotel and he felt warm. His temp was 102.7!!! I called and they told us we could try and stick it out at home. His temp broke over night. His leg hurts, but otherwise he is doing well. He is on no pain meds.
What we know so far: Alex most likely has a mitochondrial disorder. We will have the biopsy results back in 6-8 weeks. His brain, heart and eyes are not being effected. Which is wonderful news. We will continue to monitor all these systems, but for now we'll take it. His muscles, GI tract and pancreas are being effected. There is also a chance that his liver may be. We are looking into this.
His bloodwork, testing and all symptoms are leading Dr. Koenig to believe we have found our answer. It will be a relief to me to stop searching for the why and be able to focus on what now.
As for Alex...he is absolutely incredible. He is such a joy and blessing to everyone who meets him. God has given this child a spirit that is strong and loving. He goes through so much and comes out smiling. After 17 sticks and surgery on Tuesday, he still managed to say "I got an owie, but I still like this hospital".
Thank you for all your prayers.