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

12/14/08 - Well, here we go again ...

We had been doing so well. James had the occasional blip, but he had not been hospitalized since January. (We had several trips to the ER to replace his feeding tube; they tear and the plug breaks off.) We even got brave enough to take him to Texas for Thanksgiving. We did not take his feeding pump, thinking he had been eating well and was unlikely to need it. I guess it was a mistake; he got constipated and threw up for six days. When we got home, we took him to the ER, where they changed his anti-nausea meds and gave him two liters of fluid. So far, so good.

A week ago on Saturday, James started having continuous seizures - 25 minutes. We called 911 and were taken to the local ER. The paramedics pumped him with everything they had, and he was still seizing. At the ER, they threw the kitchen sink at him and finally got the seizures to stop. They did a culture to see if he had an infection (a little foreshadowing for your entertainment.)

Well, so they admitted him in Walnut Creek, once he was transferred up there. The doctors there made some more adjustments to his meds, and he hadn't had any seizures through Wednesday, so he came home. He actually went to his day program on Thursday and Friday, and felt great. He called me a couple of times and I could his happy voice (higher than his not-so-happy voice, and sounds like he is about to start giggling). Labs discovered some bacteria in one test, but a retest showed nothing. They assumed the bacteria from the first time was from the IV needle insertion.

Yesterday (Saturday, 12/13), he started having seizures again. This time, Mary drove him up to Walnut Creek herself. They got the seizures stopped easily (danke schoen, mein Gott!). The local ER had completed its culture, however, and the bacteria was definitely something. James is now on antibiotics. He was admitted to Kaiser Walnut Creek last night. Mary is there with him, and some friends may spell her tonight so she can come to the Christmas program where I am playing bass. We'll see what happens; Mary is generally there unless she cannot be, and this week she has another musical and attendant rehearsals, so I may have to spell her.

Please pray for us all. Mary has been and remains exhausted, and I am never a peak performer anymore. I take a real mental dive when James is in the hospital, and the role of "very sick child's dad" is just too heavy for me right now. Pray that this will get handled and James can settle back into his routine. I keep wondering if this is the beginning of the end, like we thought the last time was.

Here's a picture of a happy group in June. Thanks for your concern and prayers. B

7/1/08 - 143 pounds????!!!

More than one of you have mentioned to me that I have not updated this blog in quite a while. In this case, no news is good news. Thanks to your prayers, James has come a long way back from his nadir in August. Many things are back to normal: he is living at his own place with caregivers, he's about to start a day program again; and he is eating like there is no tomorrow! In connection with his new "school" application, Mary took James to the doctor, and he topped the scale with an all-time record: 143 pounds. We knew that his arms and legs and face were fuller, that he was eating well, that he was quite a bit stronger, that he even had a little tiny bit of tummy; but 143 pounds? Before all this began, his maximum was 125. In fact, the doctor is doing some tests to determine whether he is retaining fluid for some reason. His ankles look a little puffy from time to time.

Another change: on Monday, James and Mom went to Taco Bell, and James asked for one order of regular nachos, not four bean burritos with no onions. One of his new favorites (enjoyed before, but eaten much more often now) is a "breakfast sandwich" from Jack-in-the-Box. In case you need a recommendation, it is whichever one has the most meat on it. Also, I have now been to Chili's twice with James when he did not order "beef and chicken fuh-heetas with no sour cream, double glockamoly". He likes the little cheeseburgers (and so do I).

Physically, James is much stronger, but he is not walking like he used to. When he gets up, he can walk under his own steam with just a steadying hand/safety net. We are hoping and praying that this gets better; I think it will. James has big plans for his birthday on July 7 (23).

James's parents are much better. We got to go to Cabo San Lucas for a week, and James did not have a single seizure while we were gone. (He did call us from his cell phone a few times; can't wait to see the roaming bill.) Again, thank you for prayers, and I will try to update again soon. B

1/8/08 - a new day

After his three weeks of rehab, James was doing much, much better. Since then he has been eating a pureed diet and getting liquid feedings through his tube at night. He is very close to being back to what we consider his "baseline" - gained back weight, looking more muscled and less skeletal, putting together jigsaw puzzles, laughing and talking, calling people on his cell phones. I am grateful to God and all of you who have prayed so hard for him.

Last Friday, we had a minor setback, but the end result was an improvement. James's G-tube was leaking, and there was some blood in the area. Mary took him to the ER, where they replaced it with a much better tube - better anchored in the stomach and on his chest, clear instead of opaque, snap-on lid that will take longer to wear out. (Gross? Well, ...)

James has only had a few seizure episodes, and they were stopped without any hospitalization. One hospital day for 2008 (ER), 180 for 2007.

I am starting not to be mad at God. I know that I may never know why all of this happened, but I am choosing to look ahead and look forward to more time with my little love bucket. I determined a long time ago that all James had to do was love his dad, and he has done that magnificently.

Thanks again to all of you. B

12/7/07 - a month later ...

I am shocked to see that it has been so long since I updated this page. On the Monday before Thanksgiving, we took James to the hospital because he was having seizures AND vomiting. Mary and he spent 48 hours in the emergency room - half the emergency department was being remodeled because of a broken water pipe, besides they don't have any spare staff at any time -then he was taken by ambulance to a hospital in San Ramon, about half the distance to our house and not a part of our HMO. There James continued to seize and vomit and slowly get better for two weeks. Last Saturday (December 1) he went to a rehab center about 13 miles from our house.

James has been having physical therapy and getting stronger. He also has been eating double meals and getting tube feedings at night. Today he had one generalized seizure that was stopped with Ativan. He is limp, but was pretty chipper on the phone. I'll go to see him tonight.

Mary has been forced to limit her time at the facility, since they don't allow people to camp out in the room. I think this has been good for her and for James - once, when neither of us was there to feed him dinner, James volunteered to feed himself, which just goes to show he can do more for himself if he has the opportunity.

I don't know how long he'll be where he is, but I think he is on an upper trajectory now. That alone is reason for thanks. Keep praying, and pray for his parents, who are exhausted and on edge. I am particularly pathetic. Love to all, B

11/07/07 - very bad day

James was dropped off mistakenly yesterday at our house (we had planned to take him on Sunday and keep him all week), but we had a very nice day with him. At about six this morning he started to have many, many generalized seizures. Mary ended up giving him 6 mg of Ativan in all, and the seizures stopped. He has been very doped up, feverish (could be the seizures or something else), and very slow to respond. About 5.00 pm, Mary was ready to take him to the ER, but I talked her into waiting a little longer and he got better. He is still very sluggish and has had a very bad day, but his fever is down, and I just heard him talking a little bit. (I was right i was right i was right i was rightiwasrightiwasrightiwas RIGHT. I'll say it to myself because I will not likely hear it from anyone else.)

Even more than usual I ask for your prayers. Mary and I are both exhausted and feel incapable of handling all of this. The sad thing is that no one is equipped to do any better. The ER would just monitor him; a medical-based group home would not take him because his condition is unstable; the staff at his house does pretty well, but not if he is having this much trouble. Has God produced or allowed an impossible situation? I think not, but it's looking that way at this moment.

We have been blessed by some dear friends and colleagues at Mary's school, who have provided some wonderful food for us. If you are one of those, this has been a star in your crown. Tonight I made quite a bit of food - I ate a lot, Mary ate some, Michael ate nothing. James got a can through his tube - all he can handle right now.

Off to bed. Love you all of you - keep praying. B

11/10/07 - not really worse, but ...

Not really better. It is a real balancing act to get all meds in him, along with anti-nausea stuff, and get him to hold down his food. Friday night was fine, but Saturday afternoon James lost his lunch. Mary is taking a leave of absence from school - she finally wore down to nothin' (like me). Pray that we will have the energy to do what we must.