Sorry for the lack of communcation. We return to see Dr Cohen (for the third time) in a few minutes, so this will be quick.
We arrived safely. The last bit of the drive was in snow, which was supposed to drop a trace of accumulation. Clevelanders run on different measuring devices than us Southerners because we got 6 inches. :) It has been unbearably cold with strong winds, but what they lack for in outside temps here they more than make up for in the warmth of their treatment of us.
We saw Dr Cohen yesterday morning at 8. He spent about 2 hours with us. He set aside the whole mito diagnosis and took a detailed medical history. Fortunately, I had requested discs of Will's MRI's related to his Chiari; they were of huge interest. Dr Cohen did loads of labwork (the tech gave Will juice afterward because she drew so much...she was a riot!). We did have to convince Mary Washington Hospital to overnight to us the disc with Will's two additional head MRI's, and they arrived safely at 8 this morning.
We returned to Dr Cohen this morning. The mito lab work won't be back for a month. The other lab work created the need for yet more lab work. Essentially, he's looking to see if there is diabetes or pre-diabetes due to ketones being spilled in the urine. He also talked with one of his favorite neurosurgeons and here is where it gets a bit...painful.
The short version...we see Dr Cohen again in about half an hour. He is chatting with a doctor in Cincinnati who specializes in Chiari's and in brain stem surgery. The basic presumption here is that a good portion of Will's autonomic dysfunction is likely caused by pressure on his brain stem. Prior to his decompression, there was no kink. Now there is a significant "kink". The brain stem should be nice and straight and Will's is not.
So, we are now adding vitamin C to his regimen since it helps the Complex III mito issues. We are waiting results on the mito bloodwork. We return to Cohen in half an hour to hear the results of his conversation with the doctor in Cincinnati and determine when we have to go there. (We really like touring Ohio!) We should also have the new blood work back and hopefully have a few more answers.
So this hasn't turned out the way I thought it would. It is extremely overwhelming to consider that we are facing more brain surgery and nowhere near home. And we pray that we aren't looking at diabetes to add to the fray.
Will is managing. He is obviously not thrilled at the moment. We are so grateful for the Lord's provision of this trip...and hopefully answers...or at least more of the right questions???
Will update as I can.