10.31.10 - Improvement in many ways, but ...

Fever is gone, in part thanks to a new contraption: a chilled-water blanket attached to a dorm-sized refrigerator. White blood cell count is back to normal, and oxygen saturation is what it should be. This is good news, but James is still non-responsive. The most response we have gotten is when he shook his head while Mom was suctioning his throat.

I will admit that I have been pretty angry at God about our current situation. I know He is sovereign and can do what he wants, but I cannot understand why the sweetest human being on earth must linger in this terribly compromised body, and why his family must be beaten into submission by this illness especially after two deaths of people close to us in the last month. Bad and faithless Dad, huh? So you can see why those of you with more balanced perspective must pray all the more for us. Mary of course has rallied from her downtrodden, exhausted state as she always does, but of course I am on pins and needles and have a very persistent flare of gout. I feel childish, wanting someone to acknowledge my pain and either scold me or comfort me. Michael is being unusually supportive and sweet, to his everlasting credit.

I guess that is quite enough for now. Your prayers are working.

7.25.10 - I don't know what to tell you, but keep praying

Today we are having a prolonged visit with James. He is quiet, but he has been awake several hours and has been full of smiles. A couple of months ago his meds were reduced slightly to see if some of the side effects (tremors, teeth clicking, sleepiness) would abate or improve. For a while there was notable improvement, but James has more or less slid back into the previous state. Today I have been surprised at his alertness, his unprompted speech (minimal, but more than usual), and his cheerfulness.

I don't know whether this is a surprising thing for me to say or not, but today I do not think James is about to die. We have been on such a long trajectory of decline that it's hard for me to believe I feel that way. While I don't expect him to bounce back to where he was four years ago, I think he could stick around for a long while like he is. It is clear that James is happy and not suffering, and he is not worried about what he cannot do for himself. He has always loved being taken care of. Today and lately I am praying that God will sustain us for however long this haul is, physically, financially, emotionally, and every other way we need. It's fairly expensive for a retired guy to support his household, but I am absolutely sure it was (and is) the right thing for us and James.

I feel a little stronger myself - for the last five years I have been (unsurprisingly) quite depressed and needed a lot of sleep, but that seems to be changing. I am working harder on my physical activity - more cardio, including swimming laps. Lord willing, I will get back to a place where I can do some part-time work of a more lucrative nature, AND figure out what that might be. Does anyone need a revocable living trust or a will? I also passed my notary public exam and am waiting for my commission to wind its way through the Secretary of State's office.

The summer break has been very good for Mary. We enjoyed a short trip to Gilroy for the Garlic Festival, including a stop in Salinas for the Steinbeck Center. I think she will be rested and ready for the school year, although there have been a lot of changes at her school which may make things more difficult in some ways.

James is still going to a day program three days a week. At a recent meeting of caregivers, some suggested that he go back up to four days, but we think that might be too much. James's opinion was clear: he does not want to do it. Of course, if I had the caregivers James has, I would want to hang out with them as well. Thank God for June, Chika, Justin and James the Cargiver - they are all sooooooooo amazingly good and loving.

We would not be here without your faithful prayers - thank you so much. B

1.26.10 - No cheese pizza

Tonight Mary went to visit James. It is non unusual for him to be tired after his day program, but he was especially so tonight. He wanted the TV off, he did not want a CD to listen to, did not want Mom to read or sing to him - all he wanted was for Mom to rub his head. After a while of that, his hand came up and rubbed on Mom's head. You already know he is is the sweetest boy in the world; this is just more proof.

Tonight Mary asked James if he loved Jesus. He replied, "I don't like cheese pizza!" I guess he misheard - Jeezus, peetzah - but once that was straightened out, he confirmed that he loves Jesus. (We already know he loves sausage pizza.)

Over the weekend we all enjoyed a visit from Uncle Steve. James spent the night over here. He was in and out of consciousness as usual, but was glad for the company and the hubbub. Once he told Mom to move so he could look at Steve.

We appreciate your prayers so much. Mary is feeling stronger and so am I. James is cozy and loved. B

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

1.21.09 - Due for an update

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