More updates - John this time
-Update by John
To add a bit to Seema's update, Iain has had a few tough days. Since Monday the pattern has been that the mornings are pretty good and the afternoons less so as he begins to shake and fidget. That is then followed by a night of sleeplessness. Today was day four of no sleep.
He was having a rough morning. The general shaking was starting earlier than the previous days. While I was standing at the base of his bed with the Psychiatry team, he started a (what turned out to be brief) seizure. Seizures are quite unsettling to witness.
As Seema said, the CT scan didn't reveal anything. The MRI has also turned out to be normal. The lumbar puncture (spinal tap) is happening now.
A bit of levity. Over the past few days we've been actively engaging him during the day in order to get him back to a normal wake/sleep cycle. One of the things we've been doing is playing games, Connect Four in particular. Since he can't speak and his hand gestures are limited, I've used the game Connect Four as a proxy for his mental state. Now I know what your saying, go easy on the kid... Nope, I play to win!! Unfortunately for me, despite a transplant, massive blood transfusions, 3+ weeks of narcotics, neuroleptic malignant syndrome, ICU psychosis and (at the time) two days without sleep, I still can't beat him... :)