The visit from Uncle Steve over the weekend did a lot to perk James up. He has gotten out of his bed more, into an easy chair. Last night he woke up screaming for Sarah or someone - my guess would be dreams or perhaps the side-effects of one of his meds or both. Much family spent the afternoon with James on Saturday and that seemed to make him happy. Friday Steve and I went over and repaired the broken access door to the supports of James's house. It seems that some children had decided that was a good place to play. They were messing with the door again Sunday and playing on James's wheelchair lift. They would not leave when caregiver told them to, so I called the police. I hate doing such old-person things, but I AM old, and it is dangerous under that house and on that lift.
James has a doctor's appointment tomorrow (Monday). The doctor has set us an appointment at UCSF for more round-the-clock monitoring. Mary finally told him that we were discussing hospice and other options for James (he's not ready for that yet), and he decided that there was something more we could do. I am not sure he gets that James is wasting away, and that this is not just a neurological problem, but the seizures cause all of the rest of it.
James had the start of a bed sore, so he has to be turned a lot and medicated with "barrier" cream. Like I said, he seemed stronger - could support a little more of his own weight on his legs, could pull himself up in bed, etc. We are determined to keep him out of the hospital as much as we can, and do what we must to stop seizure episodes. That means we must use our discretion in using the emergency meds. James went to ER last Wednesday, but we took him home again.
Mom and James were talking about the tube down his throat (ventilator), which he hated. He said he did not want that again, and Mom asked him if he was ready to go see Jesus. James said no to that. I guess he is content enough in his situation. Pray for his strength and healing. Thanks, B
