Wednesday, June 5, 2013

An Update as of 6/4/13



We had a good first day at Mayo. Because it was drizzling rain, we decided to take the underground walkway to the clinic. It was a short walk from our hotel and we never even had to go outside. We were surprised, as we got off the elevator in the basement of our hotel, to find the walkway as busy and as crowded as any morning rush hour train! We took the plunge and joined the stream of people flowing briskly toward this medical mecca, the sick and the well together. 

When we arrived at our appointment, the waiting room of about 60 chairs was already filling up, even at 7:15 in the morning, with a long line forming down the middle.  Four women at computers worked to check people in at the front of the room. When it was our turn, we handed over the three sets of medical records we'd brought with us, along with five CDs of images, and we were given a pager.

When we got to see the doctor, he spent nearly an hour with us, efficiently asking questions and gathering information to piece together the storyline of the past 9 months. Bryn joined us on speaker phone and made an invaluable contribution. One thing that stood out to me in that conversation was that he said that people who he sees with this condition have rarely been diagnosed as quickly and had treatment begun as early in the disease process, and that Bob's current level of functioning and even his being alive is attributable to that, thanks to Bryn's tenaciousness. 

When it got to the recommendations part of the conversation, lots of information was coming at us pretty rapidly. Thanks to tenacity and good fortune, over the next three days Bob will have bloodwork done, a PET Scan, an EEG, an MRI, and three other appointments with doctors. Like our last hospitalization, they are being very efficient in gathering the necessary information to make informed adjustments to his treatment.

Dr. Pittock acknowledged that we don't know and can't know at this point about the level of reversability of Bob's current deficits, but we all remain hopeful that if we can get the inflammation to settle down, his brain can heal.

Thank you for staying with us on this long journey. We are grateful for your prayers.

Megan

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