11.04.10 - James is home

I have to say I am shocked at how well James is bouncing back. He is still sleeping a lot, but he was before this episode. He has to finish his antibiotics and build up a tolerance for tube feeding again. Also, the doctor does not want him eating anything by mouth for a week; he suspects James's pneumonia was aspiration-related. James gave me an enormous hug and big smiles today. We will see when he can go back to the day program - he won't go tomorrow, anyway. Thanks millions for the prayers. B

11.02.10 - Better, we'll see

The plan was to move James out of ICU today. He still has a touch of fever, which is preventing the replacement of his temporary g-tube with a permanent one. I saw him yesterday and he at least had his eyes open. It warmed my heart that I was able to get him to smile - he liked my new "Clic" reading glasses that come apart at the nose piece (cf. Dr. Sid Hammerback on CSI:NY). That is the one and only smile we have seen, but it was a big one. James got a PICC line, a semi-permanent access for blood tests that will keep him from getting stuck multiple times for each test. James has never flinched or complained about this sticks, even when he was a little boy, but the techs are having a hard time finding veins.

We still are not sure what's going to happen. I believe James will be allowed to go home to his house because it is so well set up, but I don't know that he will bounce back to where he was. One palliative care nurse suggested that James was on a normal trajectory for people with CP - slowing of digestive tract, lung difficulties. We almost never think about James's CP diagnosis, but this makes sense.

Thank you for your prayers; I am feeling better. Magnificent Mary is at her best in this situation by the grace of God. I'll keep posting. B

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.

10.31.10 - ICU, fever, sepsis?

James is in ICU. He has signs of sepsis but is receiving antibiotics. Fever was 104, now 103. I think we are refusing a subclavian line. Keep praying, please. B

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