So Scott has been having a slow recovery from the shunt surgery this week and we figured out today (with his surgeon's help) that he is experiencing low pressure in his noggin (vs. the high pressure prior to the shunt). The temporary remedy for this is that he spend most of his day laying down flat (or almost flat) because he feels best when laying down. This slows the draining through the shunt and in turn makes him feel better. We will look into other solutions down the road, if needed, but we need to keep the pressure from going high again so that the incision from the August 18th surgery fully heals.
He is still on the path to start the new trial on Monday and he needs to be at MSK every day next week so it will be a busy week for him and his Mom -- thank God for Jan!! She is going to spend the week bringing him to and from the city for the tests and appointments this week so that I can be at work and home with the kids in the afternoons and evenings.