James had five trips to the ER in December and has already had one in January. Three times he was in "status epilepticus" (sp?), i.e., seizures would not stop even with the meds we gave him. After two hospitalizations, James's anti-seizure meds were increased significantly. Since then, we have taken him twice for uncontrolled vomiting and once to replace a broken feeding tube.
The nausea has flared up a couple of times recently, but James has not had any significant seizure trouble (probably some "absence" or "petit mal" activity, but nothing that goes on and on) since Christmas Eve. He has been going to his day program, where he plays games and visits. The downside now is that he is kind of zombie-like: sleeps a lot, can't really pay a whole lot of attention. This is sad, but at least we know he is not in any pain or distress.
Sometime back, someone wisely pointed out to me that James's seizures do not cause him any suffering; when he has them, he is unconscious, and he does not complain of pain afterwards. The nausea and vomiting are a different story. He bears up pretty well and does not complain even so, but there's not much quality of life for him.
We will be meeting with his caregivers and caseworker on Thursday (1.22) to discuss his current state and where we go from here. It may be time to find a more medically-capable group home for him or something. We gave James back to God a long time ago, and we trust Him to do the right thing, but we get pretty depressed seeing James in this state, and we keep praying that James will not suffer whatever else happens. He is just as full of love as ever, but he needs a whole lot of help. Keep praying for all of us, please. B
Wednesday, January 21, 2009
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