Thank ya'll so very much for your prayers! Thank you to those of you that emailed and let me vent even further with you. I hope that this email will help answer some of those questions.
Abe will not be having his muscle biopsy done tomorrow. Awhile back after discussing with his doctors the possibility and need for a muscle biopsy, Dr. Krawiecki, a doctor that I have loved and admired for years said that he would prefer Dr. Shoffner to do it. He definitely wanted a fresh biopsy. You get clearer answers from a fresh muscle biopsy and the can have some saved and frozen for further testing.
Without getting into too many medical details and/or hospital politics, Dr. Kendall - the mito doc was at one time fairly recently in practice with Dr. Shoffner. She left and went to Emory. Dr. Shoffner is in Atlanta and did Mary Elizabeth's muscle biopsy 15 years ago. Well we wanted Dr. Kendall to see them but wanted Dr. Shoffner to do the muscle biopsy. If we went with Dr. Kendall on the muscle biopsy it would have to be frozen and sent to Baylor. Frozen muscle biopsies have a high false positive rate. It crutial that everything and everyone was in place tomorrow at the time of Abe's surgery. The muscle tissue could only stay on ice for a certain amount of time so the currier had to be ready. Then they had to make sure the right person was in place at Emory to process the muscle to be frozen and shipped to Baylor. That's why Abe could not be first on the surgery list. His surgery is later in the morning because the Emory genetics lab had to be opened for the processing. I hope all this makes sense and helps answer some of the questions about the importance of Dr. Kendall still being there. If this was done wrong or anything at all messed up Abe would have to have his other thigh cut for more tissue for another biopsy. Not a risk we or any of his other doctors are willing to take. We would like for this to be as accurate as possible so we know which direction to go in with Abe to get him the best possible treatment. So long story short this has been going on for months. Discussing with all his doctors what should be done and what would be best for Abe.
There was also concern about his body handle two surgeries at one time. If he does in fact have a mito disease then it could cause too much stress for his body to handle. Then there is the risk of putting him to sleep yet again if the muscle biopsy is done in the future. If he has a mito disease the risk of him being put to sleep is greater each time. Emory is working on upgrading equipment to possibly do fresh biopsies in the future so that's a possibility. Then there is always the possibility of getting Dr. Shoffner to do the biopsy which is what we were praying for to begin with. He is pretty booked for years but we will see what happens. So for now no muscle biopsy just his gtube.
I have a peace about this that I haven't had the entire time with this. I am so thankful that a firm decision was made. I feel much better and ready to go get this gtube done. Excited about what God has in store for this little baby of His. Thank you so very much for your prayers.
Oh and the way the decision came about was when Mo ran into Dr. K today. She told him that Dr. Kendall had left Emory and he said so ok Abe's biopsy is off right. He didn't hesitate. Mo talked with more of Abe's doctors and no one but Dr. Kendall wanted the biopsy done.
Thanks again for your prayers!!!