I
(Megan) am so blessed by Bryn’s tenaciousness and smarts! She has emailed four
top neurologists with expertise in this kind of problem. Last night and
this morning, they emailed back suggestions of what to do next. She
compiled it all in a document and was trying to set up a conference call
later today. When she called the office of the Riverside Neurology
team, she got the run around. The office staff would not let her send
the email or talk to the doctors. So she up and got in the car to drive
over to their offices! She is really her father’s daughter and it is
paying off! She is there now. We are waiting to see what conclusions
they draw. Apparently, the experts think we need to move immediately to
aggressively shutting down his immune system. Then we will have to be
very careful to protect him from infection.
Just
now he is resting quietly on the vent. The nurse has suggested that we
keep the room very quiet and don’t talk to him or stroke him. They just
want him to get some rest.
Keep praying for a productive collaboration between all of the doctors interested in his case.
Megan
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