James continues to have nearly daily seizure activity, but if I am remembering correctly, he has had only one generalized (grand mal) seizure this week. He has been on Ativan full-time, and that seems to have limited his seizures to complex partial ones. They are a whole lot less serious, but still he is having them, and is remaining drugged a lot of the time.
Friday night, Mary and I went over to James's house, had dinner together, played games, watched TV, etc. We decided that going to his house, where all the equipment and meds are, was a lot easier than his coming to our house to spend the night. We went for a walk around the park and dangled our feet in the cozy pool. Mary went home about 10.00, and James and I played Duck Hunt on the old Nintendo until nearly midnight. Sleeping with him was not an ideal situation - at 1.30, he scooted me out of the bed, onto the floor. About the time I got comfortable there (4.00), he needed to go to the bathroom quickly, so I grabbed him and ran. (We made it.) About 4.25, he started with a seizure, and I had to give him more Ativan. I was wide awake by then, finally going to sleep by 6.00. One alarm went off at 7.00, another at 7.30. I had a very long nap this afternoon and may be starting to settle down now. We went to a memorial service in the Central Valley, and James continued to have seizures for a while with his caregiver at the ready.
All in all, things are "not serious", I guess, but James continues to have no real quality of life. He's not gained any weight since the feeding tube was installed, but he seems a little stronger. We are going to the doctor next week, and the question becomes, what now? The two new meds don't seem to be working any better - the only thing that helps (some) is Ativan, and he may be building up an immunity. Pray for wisdom, for advancement toward some root-cause answers, and for continued patience. Also pray for Mom and Dad, and our wisdom in knowing what to do if things remain this intense and high-maintenance. We are into our 11th month of crisis mode, and we are wearing out. Both of us have wondered whether one or both of us need to quit, but that is not very financially viable without catastrophic changes. I am a little frustrated and morose and a lot worn out. More soon - love to all, B
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