6.6.2013 - Goodbye

Things have coasted along so steadily that I almost forgot about this blog.  James seemed to gather a little more energy recently; he decided he would go to his day program more often.  Mom and Dad would visit often and see his smiling face, watch a little TV, eat a snack, and play cards.  We were in for the long haul.

Wednesday night, June 5, I got a text from a caregiver that James had had a one-minute seizure.  He was given Ativan and that was that - situation normal.  The next morning, we got urgent calls and headed to Livermore.  James was having a long seizure - 5 minutes, longer than he had had in a long time.  When we got there, he was gone.  There was no pain, no long suffering; our James was in heaven.

Later we heard from James's neurologist about "SUDEP" - sudden unexpected death in epilepsy.  People who have uncontrolled seizures and other neurological issues (like cerebral palsy) have a higher risk for this syndrome. Well, check and double-check.

As I recall, I started this blog when we were going through the unbelievable trauma of 2007.  I believe it was then that we did our serious grieving, having our hopes for better control dashed, spending every major and minor holiday in the hospital, trying to keep the home fires burning and the homework turned in ... We knew the direction things were heading then, but a long period of relative stability lulled us into a routine.  We are of course tremendously sad not to have our happy, sweet boy with us anymore, but we know his extreme limitations and troubles are over.

Our celebration of James's life will take place on June 23, at 4.00 pm, at Valley Christian Center in Dublin.  I have been scanning pictures for hours.  We are glad that some family is coming.  We have had superlative support from our churches, Mary's co-workers and friends far and wide.  In days to come, we will get his house in order, but now we are just thinking about what a wonderful gift we were given in James.  God taught us a lot about patience, but love is what we remember.

5.12.2012 - Long, stable period

5.21.2012 - Long, stable period

I had not realized it had been such a long time since I updated you concerning James.  Thank God, things have been very much the same the whole time.  He is happy, in no pain, and is well-cared for.  He is getting ever fluffier, though - I think he is over 160 now.  One can't manhandle him to and from bed or wheelchair like in the past; however, we have a very nice Hoyer lift that James calls his "flying machine".  When he comes over for a visit (as he did for Mother's Day), we just hoist him from the van straight into a recliner.

James still goes to the GARDEN in Livermore (http://www.futures-explored.org) two days a week (Monday and Friday).  Sometimes he asks to go on other days, and if there is time to contact them, the bus comes and gets him.  He sleeps a lot, watches television (mostly game shows, although he seems to like Fairly Odd Parents as well), and goes on nice neighborhood "walks".  He still has his preferences and enjoys food sometimes:  when I ask what he wants me to bring next time, usually it is chili dogs or various Taco Bell offerings.

One annoyance:  his wheelchair has needed a lot of attention recently.  The front wheels needed replacing, then a week later, one fell off during a walk and had to be replaced again.  I am still grateful for our generous Chevron insurance plan, although it does come at significant cost.

The next time you hear about state budget cuts to "adult home services" or "independent living services", that is James they are talking about.  The fantastic agencies that provide these services are under the same kind of pressure in California that everything else is, but they have never left us high and dry.  Where there are gaps, we pitch in (mostly Mary!), and we are (Mary is) glad to do so.  I worry about the others who do not have family to help them, though.

Above is a recent picture with our beloved dentist, Dr. Nakhla.  She calls James her "angel", but so is she.

Enough!  Please keep praying that James stays healthy and happy.  B

05.06.11 - Another new g-tube

James and I had an extended visit today in the ER. I got a call (mid-Cup of Coffee 1!) that he was complaining of pain in his stomach and his tube site was bleeding. I went as fast as I could get there and took him to Walnut Creek for replacement of the tube. By the time we got to the triage nurse, the tube was all the way out. I am told that stomachs close up quickly, but fortunately James's did not. The new tube slid in smoothly, although it is stiffer than the last one and sticks straight out. We are hoping that it softens up some.

The only issue is he did not get his noon dose of meds until 3.45 (had to go in through the new tube, new tube placement required a confirming X-ray, etc.). Consequently he had a few very minor seizures (blinking, staring). I am grateful because it could have been so much worse. As usual, James wanted to stay at the hospital, but I am sure he will get another visit later.

I'm uploading a picture that I love - it's a little old, but it makes me happy. That cell phone was one of about seven that James had; he's not thinking about cell phones these days.

In general, James is okay. He goes to day program just twice a week, and he spends the rest of the time recovering. I have started harp lessons, and on Thursday evenings I go to his house with chili cheese dogs. We watch Jeopardy and Wheel of Fortune and play a few games of Battle. I hold up his card and my card, and James points to which one wins. Mostly he beats me.

Love to you all. B

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