10.30.10 - History repeating itself

A friend asked recently how James was, and I fired off a short "about the same" reply. I was thinking I would post something here in that vein; sadly, I tell you that things have changed a lot in the last 24 hours.

This afternoon, during the World Series game, one of the caregivers called and said that James's "g-tube" had come out. I've lost count of how many g-tubes had to be changed because of clogs, tears, missing plugs, looseness, or just old-worn-out-ness. It is an annoyance, particularly on the weekend, when we must deal with the emergency department instead of the usual doctors. Mary took James up to Walnut Creek to handle the situation. She was informed that now the ER doctors don't do tubes, the interventional radiologist does them, even on the weekends. The IR was not available, but we did manage to get a temporary tube because JAMES COULD NOT RECEIVE HIS MEDS SIX TIMES A DAY WITHOUT IT. The doctor suggested a temporary "ng-tube", but we refused it, since he hates it and pulls it out, and since watching James get an ng-tube is the WORST THING I have ever experienced. He doesn't mind surgery a bit, but this procedure makes him scream and fight.

Well, we got the tube, but while there, James had a seizure. It had been a very long time since a "big" seizure, but it was only one, so Mary took him home. While we were having dinner, the caregiver called again - James was having another one. He got some Ativan, but the seizures have kept coming. James and Mary are back at the ER. The ambulance driver said his O2 saturation got down to 60 on the ride there. but he will not be intubated; the orders are in place. Mary called just now; his breathing is rapid and his saturation is staying at about 92 percent. His fingers on the right hand are blue.

Is this the trip? Lord, please show your hand and give us strength because we have none left. Mary will call again; pray for God's mercy and comfort whatever the result. B

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

Bless his tired little heart - 6.8.10

Mary and I visited James again tonight. He was cheerful and smiled a lot. June, his lead caregiver, had assembled a slide show of pictures that she played several times for us. I will get them copied and post some of them eventually.

June and James had been playing Tic-Tac-Toe, and when I sat down, I tried to finish with him. I could not get him to hold the pen, so I told him to point where he wanted his O. He won (surprised?).

I handed James a $5 bill and we talked about Abraham Lincoln for a little while. Then I asked him about our first president, George ... and James replied, "Washington!" It took him significant effort to get that out, but I am convinced as ever that James still knows everything he did. He is still himself.

We have been noticing more swelling on his right side (face, hand, arm, leg, foot) than on his left. I'm not sure what that is about.

James is only going to his day program three days a week now; when he was going 5 days, he would never be awake when we visited. Now at least he can visit with us for an hour or so.

I am very much relieved and blessed to announce that James's benefits have been extended indefinitely. I had sent stuff in about 6 weeks ago and finally heard today. What a relief; praise God.

Thank you all for your prayers for James and us. We know that God is in control and will uphold us during what seems to be coming. 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

12.8.09 - Toes are warm

My toes are freezing, but no doubt James's are warm. He has a bright yellow tie-dye style blanket and a blanket of the United States, both of which were made for him. He has perhaps the best caregivers he has ever had, and as much love as anyone could hope for. This weekend he got a bigger TV, and Saturday night he stayed up until midnight watching it.

I don't know what to say about the rest of James. He is loved and safe and cozy, but he is losing ground slowly. He sleeps most of the day, and even when his eyes are open, he is not necessarily attentive. We don't know if he is having low-grade seizures a lot, but we cannot always get his attention. He talks very little - only nods if he has to, but of course he will still refuse coffee vocally. (That's our running joke with him.) A big smile from him is like a reward and always celebrated. He's weak, less able to help with transfers from bed to chair, etc., mostly does not support his head. He's not eating much, but the tube and liquid nutrition keep him healthy that way.

Viewed from his perspective, the minutes he is awake, spaced out through the day, are with people who love him and keep him clean and safe. He nods "yes" if we ask if he is happy. You or I would not find that a very satisfactory life, but he is content. We don't know how to pray for him anymore; mostly we pray that we will hold up and give him what he needs. 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

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