One of the caregivers had strep throat, so Mary spent the day with James Sunday, and I spent Monday with him. Before I arrived, James had had a short, complex-partial seizure (staring, some twitching in the face, some vocal sounds like "uh, uh"). Speaking of complex, the feeding and medicating schedule for James is not for the faint of heart. Every two hours, something is going in that feeding tube, meds or nutrition. I got training, so knowing how was not a problem, but the feedings take about 30 minutes if you let them happen by gravity instead of pushing the liquid in. I had a very difficult time finding a comfortable position, and then whatever position rapidly became uncomfortable. James does not complain at all, but there was one exception today.
About 9.30 am, James said "baf-room" (not urinal; enough said). This was a joyous event, because this particular process had not taken place for some days. I bodily carried James into the bathroom and set him on the toilet, where he met with success. While he was sitting, he made a pained face and said "Owwww!" a couple of times with feeling. I asked what was wrong, and he said "My bottom hurts." I asked him, "Sitting bottom or pooping bottom?", and he replied, "Sitting bottom." His little rump is so skinny it looks like hip bones with a couple of half-onions attached! He's kind of bruised back there, too, from lying around in bed all the time. This broke my heart - may have to get him a padded seat.
At 11.00 am, he went into another complex-partial seizure. The one earlier in the day stopped on its own, so I waited, and waited. About 90 minutes later, I gave him 1 mg of Ativan under his tongue, but nothing happened. Thirty minutes later, I dissolved another milligram and put it in his feeding tube - still no response. Finally, when the seizure had been going nearly 3 HOURS, I pulled out the big gun (syringe) and gave him 20 mg of Diastat (Valium gel). Finally the seizure stopped, and in a few minutes he asked me to turn up the volume on the television. Whew! Complex-partial seizures are not really harmful to James, but three hours is ridiculous. He slept most of the day after that.
He's been out of the hospital 5 days now, but James has lost a lot of ground. He is still the sweetest boy I know, and he does not complain at all about his situation. All we can do right now is be there with him and love him. We are very sad; pray for all of us. B
