what drove this decision is the fear of regret if we don't do everything within our means at this point, she deteriorates, and it's too late to do anything about it.
Just catching up to this thread--sending hugs and prayers your way. It sounds like little Madison is getting the very best care to be offered.
I'm in Dallas, too, by the way. It's very interesting (and comforting) to know that Dr. Abramson isn't too far away.
the decompression surgery went better than expected and described it as a textbook case.