9.30.09 - Up and down

It's late and all of a sudden I am all mopey and sad. I'd better get to bed, but first a report. A week and a half ago, James had a terrible episode of seizures while he was visiting us. Instead of his usual one night a week spent with us, he stayed two so we could get him under control. Mary went and changed into her hospital outfit (green pants, Hawaiian shirt, all permanent press and comfy) and grabbed her hospital bag (plastic, covered with watermelons, containing useful things one might need while staying with James in the hospital). Several times she was ready to haul him to the emergency room, but we gave him more Ativan and waited. Seizures came, stopped for a while, came again, stopped again, came again, and finally stopped on Sunday morning. By this time he had had 12 mg of Ativan since midnight Friday, and he could do nothing but sleep. It took all Mary and I both had to get him in the car and to his place on Sunday.

What a difference a week makes! While James slept a lot, as he frequently does now, he was awake and talking. One of the things he was talking about was slings, like David used to kill Goliath. James's favorite Bible video features the voice of Robbie Benson as David and Herschel Bernardi as Goliath. He told us, "I wish I had a sling so I could kill lions and bears!" For about an hour after that, we all pretended to sling rocks and kill various feral imaginary creatures in our backyard. We all had a good laugh about that. James was able to help more with transfers from and to the wheelchair, which is certainly a blessing.

Please pray for James's tummy. He is going to see the ostomy nurse next month. We have lost count as to how many gastric tubes he has had, but (without grotesque details) the site is red and a little oozy. We would have lost James two years ago without the "G-tube", and he still gets most of his nutrition (and all his meds) in liquid form through it. Now he is a big fat pig of about 140 pounds, well-nourished and medicated to the point of absurdity. I don't know how he stays awake at all.

Tonight I thought about how impulsive and hyperactive and just plain wiggly he was as a preschooler. I remember it was impossible for him to sit still in church, much to our frustration. I wish I could go back 20 years and hug him hard and apologize for not being grateful for that energy and joie de vivre. What a gift of love and faith and patience he is! I can't help mourning what we've lost, but he still has a huge part of our hearts. Good night, B

9/1/09 - So many little things

James has done really well for a fairly long time, but things are starting to unravel a little. He was having a seizure episode once a month, but now it's every two weeks. Tonight we had a report of general loopiness that we think was attributable to subclinical seizures. He let his tongue hang out of his mouth for a long time without retracting it - this is something totally new. After one Ativan, he was able to tell Mom good night on the phone. I am concerned that he is outgrowing his doses of anti-seizure medication, and they are already huge doses. He has continued to gain weight (I would call him "robust" now; we'll get a weight at the doctor's, I hope). He is weak, though, from the emergency Ativan doses and seizures, and a lot more to lift.

James is on the third year of having a feeding tube in his stomach, and as the hole through to his stomach got bigger, the tubes have gotten bigger. That is good news for feeding and meds; one of his meds is "sprinkles" that would often clog the tube up, and that's much easier now. However the site on his abdomen where the tube comes out gets red and sometimes oozy. I don't know if we are stuck with that as long as he has the tube, or what they would do if the hole got larger still.

James also has had trouble keeping his food down. At the moment he seems back to normal in this area, but with all these things going on, he is tired, not talking, and not terribly responsive. Mary is discouraged and so am I. On the brighter side, we are keeping things up better around the house, even cooking a few meals and cleaning up after ourselves. Michael is being so much help and learning skills he will need before long. It is still hard to stay on track when James is not doing well.

I don't think James is in mortal danger or anything, but his quality of life is so discouraging to us right now. Bless him, James never complains, always loves. Please pray for all of us. B