Yes, I do realize that I have now posted twice in the same day twice now. :)
For those who wanna know...We saw Dr. T today and, for the record, may I state that I love this doctor? While she may not have all the answers, she is one of those rare birds who is willing to state that she doesn't know and ask questions of others until an answer can be found. Many mito patients go for years without a diagnosis or a physician willing to think outside of the box. From the outset, we had an amazing neurologist who has been spot on with every diagnosis that has been added to Will's pedigree...and trust me, he has quite a pedigree at this point.
So, after last week's fiascoes and this week's traumatic infusions, we were very happy to have an appt with Dr. T. Did she have all the answers? Nope. We have no clue why his blood pressure is dropping so dramatically during his infusions. She agrees that he isn't perfusing adequately, which, in lay terms, means that his organs, including his brain, are not receiving enough oxygen which means that they suffer damage every time this happens...which right now, is twice a week. Not a happy thought. She agreed that we needed to see our cardiologist.
But, on the other hand, she is willing to pursue the ketone issues and plans to chat with our previous neurosurgeon regarding the diagnosis by Dr. Crone in Cincinnati. (Dr. Crone just happens to be our previous surgeon's mentor...) She is also going to talk with her favorite sleep doctor for a second opinion on the sleep study/sleep apnea diagnosis. Her belief is that we have central sleep apnea, not obstructive...which would make total sense.
So, do we have all the answers? Nope. But we have a great doctor who truly cares about William and is willing to doggedly pursue answers in the hopes of sustaining William for as long as the Lord allows... And really. Isn't that what anyone who is sick wants? A doctor who truly cares and is willing to go to the mat for her patient even when he has a rare disease that no one understands? While none of this is easy, Dr. T helps make it all a little more bearable. And that is not to be underestimated.