7/26/07 - Home!

James seems to be adjusting to his "PEG" tube and his liquid feedings. He has never really complained about any of it, and the only time he mentioned pain was the day after it was put in (last Wednesday), when he seemed to have a lot of gas for some reason. We took him to Livermore at about noon today, and we were met by his main caregiver. Tomorrow (Friday) the home health nurse comes to check on him and weigh him (as well as a carpet cleaner and an exterminator for the ants attacking his bagels). James is getting 1mg of Ativan twice a day as a prophylactic against seizures; that seems to be working. Three milligrams in a day was unnecessarily high, and 1/2 mg twice a day is not enough, and we found all this out in the hospital. James is sleepy pretty much all the time, but that will be okay while we get the latest med up to full strength.

Please pray for the following: (1) that the new med, Trileptal, works when it gets to full strength in a few days; (2) that we will be able to wean James from Dilantin, which is causing tremendous swelling of his gums; (3) that he will eat, eat, eat and gain, gain, gain; (4) that his parents will have hope and will get some rest. B

7/23/07 - still in hospital

James had some upper GI testing today, because food seems to be moving through his stomach quite slowly. Doctors started giving him prophylactic Ativan orally, to see if that would prevent seizures before they started. He had three days with no seizures, during which the Ativan was held and not given to him several times.

Weighed again today - 104.7, three pounds down from last week. That probably has something to do with the surgery last week and the 24 hours without food.

Mary and I had Sunday, our 29th anniversary, pretty much to ourselves. James did great with his caregiver. Tonight James called me and begged me to replace his lost cell phone. He hasn't thought about it in a long time, so perhaps he is feeling more himself. Keep praying - he's in pretty fair condition, but no answers yet on what is causing all this or what can be done about it. B

7/21/07 - sleepy

I spent a long time with James yesterday, but mostly he was asleep. He had seizures in the morning, as he has been doing every morning, and 3mg of Ativan to stop them. We had training on use and care for the PEG in his stomach. Hard day. Mary came home last night, and that was terrific for me. Off she goes again in a few moments. Tomorrow is our 29th anniversary, and we are working on some kind of retreat. Any ideas? Let us know.

Of course James needs your prayers, but Mary and I do too right now. We are pretty exhausted emotionally, and this has gone on so long with no end in sight. Thank you, friends. B

Report on PEG and sweetest picture of sweetest boy

We went down to "interventional radiology" to have the PEG put in, and the doctor says, "Wouldn't a 'button' be better? He might not pull it out so easily." Well, we'd heard of "buttons" which are larger and flatter, but that would have to be done by a GI doctor, and we couldn't get any on the phone to discuss it, so the PEG went in. James came through it without complaint, smiling big at the recovery nurses and his friends Mark and Joanne. We've been lecturing him about not messing with the protruding tube, and he's usually pretty good at doing what we say, but who knows what he might do in the middle of the night? Pray he won't yank the thing out, and pray that he survives 24 hours without food without too much complaining. Here we just get him eating well again, and now this ... well, it will help build him up. Nasal tube comes out tomorrow.

Mary took this picture a couple of days ago, when James was feeling really good. He is the sweetest boy, and so full of love. He gave me five kisses on the head last night, and it almost made me cry. (James allows his parents to kiss him only on the hair, so that's what he does to us as well.) Building him up will be a long process, but maybe he can come home again for a while after this. B

7/17/07 - PEG coming

Hug from Michael, 6/22/07

Mary just called and said they were going to put in a PEG as soon as tomorrow. That is a percu-taneous endo-scopic gas-trotomy, a tube that goes straight into James's stomach from the outside. That would replace his NG (naso-gastric) tube, and is a more permanent solution to his nutrition needs. We have been debating whether this needed to be done for some time. The doctor today said that James's protein levels were the equivalent of starvation. That is, he doesn't have enough protein to build any muscle. He will be able to eat as well, but he can also be beefed up if he is out from seizures.

Pray that James will tolerate this PEG well, and that he will not accidentally pull it out at night, like he has done several times with the NG tube. B

Pix

James mowing our yard in February 2005. He still asks about our yard, but we tell him it's Michael's job now.














James in his tuxedo for 2005 prom. He had seizures the night of the prom and didn't get to go, so all we have are these pictures we took afterwards.
Happy James at Christmas 2006. Dad in background.

7/17/07 - better today

Last night after all my chores and various running-around, I went to see James at the hospital. It was about 8:20 when I got there, and he was alert, smiling, and had just eaten all of his dinner. I had picked up my dinner at Whole Paycheck (Whole Foods' more accurate nickname), but they didn't have any forks out. James and I shared my macaroni and cheese (big noodles, probably rigatoni) and ate them with our fingers. He turned down green beans, no surprise to anyone.

I can't believe how much better he is now that the Dilantin level is down. He was stiff-bodied, unable to walk or stand, talked at about three words a minute ("stuck needle" syndrome - "I, I, I, I, ... want, want, I want, I want, ..."). Now he is much more back to himself - cheery, smiling, joking with Dad, talking well (for him).

James is in a semi-private room with another male. For the first time in all these months, they told Mary she could not stay in the room with him. In the past, they asked the other patient if it was okay, and they always were gracious about it. This particular nursing supervisor was unwilling to do that. I think perhaps that was a blessing in disguise, because Mary went home and got a decent night's sleep. She left about 9.30, and I stayed until 10.00. James and I held hands, talked about why he has a feeding tube, talked about how he would be by himself that night, and he was fine. I turned off his light and TV and left a very happy and sleepy James in his cozy bed. (James had spent the night alone before, while Mary was in Austin for her niece's wedding. I just can't do that hospital thing with my sleep apnea and my general sensitivity to any lack of comfort. He did fine and was not at all upset, so no surprise that he did well last night.)

Now, if they can just find out what is causing these seizures and so many of them ... B

7/16/07 - back in the hospital

I just deleted the nice message I wrote accidentally. Poot!

James had about 3-1/2 hours of "complex partial" seizure Sunday morning, despite all emergency meds, and Mary took him to the hospital in Walnut Creek. James's neurologist is in Redwood City, across the Bay, so there is some debate over whether he would be better served over there for his chronic seizure issues. As soon as they get him to the emergency department, James is safe, because they put in an IV and can give him small hits of Ativan as needed and control seizures. James has a feeding tube, which is good given how painfully thin he is. Seizure episodes are coming too close together for James to wake up and eat, so he is down to 105.

James was watching Teletubbies when I talked to him a little while ago. He also likes The Price is Right (a perennial favorite) and Sit and Be Fit on PBS. We can count on Animal Planet and the Food Network for other entertainment.

Dad is stressed and worried about the creeping chores. Maybe Michael will sort laundry and get that started, but there is plenty else to do to keep (make?) this place livable. The brand new lawnmower locked up Saturday on its second use, so I've got to get that fixed. Bills are somehow hard to pay when I'm depressed, even though we have the money. Bleah!

Thank you all for prayers and encouraging words. More soon. B

7/14/07 - about 3 out of 10

James had 3 generalized seizures at about 1 this morning. He was alert for a little while this morning and we played Craps with Giant Dice. He hardly ate or drank anything and was asleep for most of the day. He is still very, very drugged from his high Dilantin level, and who knows what the new med is adding to the torpor.

Today big brother and sister-in-law came over for a while. James asked for "fork food" from Taco Bell (enchiritos). He wanted four, and it is not worth arguing that he will not eat all of that, but he only ate about four bites and fell asleep. Matthew weighed himself on the scale, then picked up James and weighed the both of them. After subtracting, we get 105 pounds for James. At his best, he is a very lean 120, but he is very bony now. If we can't get him to a better state soon, we may have to debate the stomach "PEG" again, because he can't afford to lose any more weight.

As we were taking him to his place, he was talking - with his eyes closed - about how he could not get his kite up in the air. (Proabably because he was up there himself.) We are hoping that he will be perking up in the next couple of days as the Dilantin level goes down.

Pray for James 7/13/07

Like so many others, I am trying this out as a way to keep people up on what is happening with our son James. Those who know us know that James has had uncontrolled epilepsy his entire life, and that we his parents have worked hard to keep him healthy, safe and happy. Since October of 2006, however, things have become much more difficult for James and for us.

In October the hospitalizations started in earnest. James began to have seizures episodes every four days, instead of every two to three weeks. We have not found any reason for the change; it seems that his then-current cocktail of drugs just stopped working. Since January, James has been in the hospital or emergency department for more than 90 days. Often we wound up there for seizures we couldn't control at home, for lack of nourishment or hydration, for drug toxicity issues, or a combination. Today he has been out of hospital for a full three weeks, but he has been having seizures nearly every other day. "Emergency" meds have become nearly daily meds. James has lost a lot of body mass, and we are trying everything we can think of to beef him up. He has been stiff, talking even more slowly, unable to stand or do anything for himself.

Yesterday James had an MRI that did not reveal anything obvious. There may be an area in the frontal lobe to look at more closely later. We are trying yet another new drug and weaning him off Dilantin. (Dilantin toxicity has been a real problem since James got off Lamictal; levels soar, and we have a hard time keeping them low enough.) We spent two hours in the office with the doctor, bless his heart, pouring out our hearts, our concerns and our frustrations. We have asked for prayer from everyone we know. We didn't quite get the answers we had hoped for, but we are grateful for knowing the next few steps, and understanding that there are still things we can try to arrest these seizure episodes.

Yesterday we went to the lab for a Dilantin blood level, and today we heard it was 45 - much, much too high. This explains James's spasticity and his helplessness. We are avoiding Dilantin for the weekend, and we hope that he will be in better shape by Monday or so. Today he ate like a horse - two pieces of pizza, cheesecake, heavy cream to drink, fried chicken strips with cream gravy, evening meds with guacamole. If we can keep him seizure-free for a while, then he will stay alert enough to eat and drink properly, and may gain back some of the weight he has lost. The problem has been that he has not been awake enough to care about eating or drinking. You can pray that James will eat well and gain weight, and that his parents will not eat equally well and will not gain weight.

I think it will take me several days to record background material, but thereafter I will try to post progress. God bless you all.