I am utterly spent, and merely dragging myself around. I did not wake up until 3.10 this afternoon, so Michael did not make it to school. Of course, he could have woken me up ...
This will be brief as it is hard to write. Sunday night, I went to be with James in his room in the Epilepsy Center at UCSF. It certainly is hard to sleep with a spotlight on James all night (so they can see him on camera), but that was the least of the troubles. I don't think he had any seizures that night.
All day Monday and part of the day Tuesday, James whined and complained about how sick he was of the hospital and how he wanted to go home "right now". Those of you who know James know this is not normal behavior at all. I don't blame him for being sick of hospitals, but it is not like him to complain. Tuesday afternoon, he went into sort of a non-responsive, non-verbal state, and has only occasionally emerged from that with a laugh or two. It appears he watches television some of the time, and he tracks with his eyes the people in the room, but he does not answer with anything when spoken to and does not speak. The neurologists don't believe this has anything to do with the medication and have not heard of any syndrome that would cause this. They have urged us to be patient with the increasing of his current meds, saying that the liver may not have cleared out the old stuff yet, and that things may get better when med levels are where they are supposed to be.
Sadly, James is still having quite a number of seizures, most often at night. Tuesday after midnight, he had four seizures, then two Wednesday, two Thursday, and SEVEN on Friday (all generalized). They have not been giving him Ativan to stop the seizures, because they need to know whether the other meds are working. From now on, though, he gets Ativan after three generalized (grand-mal) seizures.
Another disturbing aspect of all this is that the doctors think there is something, as yet undiscovered, that is causing James to lose his abilities and have seizures, and we don't know what that something is yet. James has been assigned to an internist who is brand-new to our HMO, and we are trying to figure out how to approach that (i.e., get a more experienced and committed doctor on board), so we can try to get him better before he is completely gone.
For now, James lies in the bed and stares. He is fed everything by a tube into his stomach. I feel as if I have lost him already, but we are trying to be faithful to him and to God in these difficult circumstances. I will take up the role again on Monday night; it looks as if he will be at UCSF throughout next week. Keep praying for answers, God's demonstrated love and support, and for James to feel safe and loved. B
