An Update as of 9/14/12

Last evening Bob was put into a medically induced coma for what will likely be weeks and may be months while the firestorm in his brain has a chance to cool down. This was not unexpected. The experts in the kind of condition Bob has predicted that the storm of seizures that have been assaulting his brain could not be controlled until the immune suppression medications do their job. The seizures he has been having have been “subclinical” meaning that we cannot see anything in his behavior, but they show up on the EEG, and they did not subside despite being on high doses of three different seizure medications. Every few days they will lighten the sedation and check to see if he starts to seize again. If so, they will take him back into the coma to wait for a while longer. Currently he is quite swollen, but other than that, he seems to be resting quite comfortably.

The challenge is to keep Bob as healthy as possible under these very unusual circumstances. There are at least four teams working hard to take care of him: The ICU team of doctors, the Neurology team of doctors, the nurses, and his bedside care team. Now the job of our bedside care team changes a bit. We have to be fastidious with hand-washing because of his immune suppression. They already caught the beginnings of an infection when they put in the trach and put him on antibiotics. The nurses change his position every two hours, and the bed he’s is in can fold up into a chair-like position, so we are trying to sit him up a couple of times a day. Those of us on his care team (currently Bryn, Maura, and me) are doing what I call “ICU Pilates” to get his joints moving at least five or six times a day. When Bob is awake and living his normal life he is in nearly constant motion, so we try to make sure that his is not too still for too long. He also has leg squeezers on his calves to prevent clots and his bed can even pound his back to stimulate his lungs. He always wanted a massage chair and now he has a massage bed.

The results from the Mayo clinic all came back negative, deepening the mystery of what in the world has caused this all to happen to Bob. We may never know. Our last chance of perhaps getting some answers is from the samples we sent to Dr. Dalmau in Spain. They should be arriving there TODAY and will take 7-10 days to get the results. Dr. Dalmau does these tests free of charge for cases like Bob’s when all of the commercially available tests have come up empty-handed.

Things have stayed remarkably busy these past two weeks, managing Bob’s care. Yesterday for the first time I settled down enough to read a little bit of a (day-old) newspaper, and did a Suduko. I thought about starting to a book on my Kindle, but couldn’t focus beyond perusing the list of books we have there and thinking about what that says about Bob’s wonderful wide-ranging curiosity. Our biggest and most challenging job is to have patience with however long this healing process takes. I may try again to get started on a book later today. Then maybe next week some email and a little work. It is likely to be a long wait.

I am so, so grateful for all of the people who have stepped up to help. Today I am especially grateful for all of Bryn’s skill and tenaciousness in getting Bob the care that he has needed. I am also particularly grateful for Maura and Erika, who in addition to taking care of me have taken over our businesses so capably. And I am also grateful for all the people who are holding Bob in prayer. We are likely to need those prayers for some time to come. 

Megan