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

7.7.09 - Now We are 24

We celebrated James's 24th birthday with family and friends at Chili's. As he usually does, he ordered "beef and chicken fajitas with no sour cream, double glockamoly". He ate a lot of chips before they came, though, and could only eat one tortilla full. He will have the rest tomorrow at his day program. He was full enough that he even turned down a cupcake. We were all surprised when he managed to blow out all 24 candles with one puff.

"Stable" continues to be the word. James has had some "nausea-plus", but not any serious episodes of seizures. "Transfers" (i.e., from car to wheelchair, from bed to chair, etc.) seem to be better; James seems to have better leg strength. Lately he has been talking more (and asking for more). He wanted 24 presents since he was 24 years old, so the presents were tiny. He got several new card games and a "Trouble" game where the die is in a popper and does not go all over the room. This idea's time came a long time ago.

Thank you for continued prayers for our angel. B

6.10.09 - "Stable"

I guess "stable" is the word of the day lately. James has not gotten worse in any way, and in some ways he is getting better, a little, very slowly. Last Friday Michael walked him in from the car, and that has not happened in months. James is starting to show more interest in food and even going to the grocery store. Last Friday he was worried about "Doritos in the red bag" and "blueberry muffins". He would mention every ten minutes or so that we needed to go and get them, and he wanted to go when the time came. He wore himself out on Sunny D recently, so we have a whole case here.

I am grateful to you for your prayers and support. James is still cheery and loving. He has little rashes and infections that require trips to the doctor. The last time we went for a feeding tube replacement, they gave us an extra, and one of the caregivers can replace it if necessary. There are many small annoyances, but the good news is that James is well-nourished, eating "recreationally", comfortable in the new wheelchair (green again - his favorite color these days), and social. I'll try to update again soon. B

3.27.09 - The good news is ...

James is not in any pain.
He sleeps a lot.
He has been pretty close to seizure-free.
He still has a ready smile for his dad and his friends. Recently I realized that James cannot smile insincerely; if he smiles, he beams.
He can still eat Cheetos and drink through a straw some of the time.
When he needs something, he will tell us.
He has wonderful caregivers and lots of people who love him.
He believes in and loves the God we also adore, and we know that He will work James's situation for His good and His glory.

We will be getting a new wheelchair in the near future. James needs one with a reclining back, since he can't sit up straight on his own anymore. A harness to hold him up was deemed inappropriate because of James's scoliosis. (We've known about that for years. In the grand scheme, it's minor.)

James had a bunch of friends visit his house recently. He had an "open house" for his supported living agency, so potential clients could see how it works. He made sure and told us about his friends' coming.

Mostly James has been making it to his day program and eating solid food. We substitute tube feedings when he is weak or asleep. He's lost abot 4 more pounds this month (127). He has a little runny-nose virus right now and will stay home tomorrow.

James may get a a special, slide-in-and-out bathtub chair, since no one can really transfer him anymore into or out of the tub. He may also get a speaking device like a friend of his has, since he does not talk much anymore. His care agency is ramrodding these projects.

James's mom and dad are making sure he is loved and safe at all times. We don't think we will ever do better as far as seizure meds go, and he may not ever be any stronger. His needs are many, and yet they are mostly simple, and they are met. I don't know how to tell you to pray for him; there are no crises, but he grows weaker.

Mary and I were talking about the so-called stages of grief. We were in denial most of James's life in one way or another. We were angry when we couldn't get what we thought was appropriate diagnosis and care. We bargained with God a lot; I can't tell you how many times I offered myself as a substitute. I think I went through depression (stage 4) earlier than Mary; she is still having a very hard time. We will be ready to accept James's fate, whatever it is and whenever it comes, but we still pray for our own strength and that James remains happy, pain-free and very obviously loved.

Words fail me, but I know God's love does not fail. Keep praying. B

February 21 2009 - Lost some ...

James has had a number of appointments recently. The GI doctor says he probably has some gastroparesis (partial paralysis of stomach muscles, which accounts for nausea and vomiting, and yes, I spelled it right the first time). The neurologist was encouraged by James's lack of seizures and was afraid to lower his doses since he is doing well in that area. Mary was encouraged that there were answers to our questions, and that the neuro said he was doing better than expected, but poor James is so extremely doped all the time.

Gastro doctor said to check residual in stomach and remove via tube if it did not drain on its own. We did that over the weekend, and James's stomach was behaving normally. He was still coughing and retching, even though the stomach was empty. So much for that.

Last Sunday (2.15) James had his first big seizure since Christmas Eve. Mary automatically gave him a dose of Ativan that was probably more than necessary, since he has not had any in a long while. By Wednesday James was more perky and responsive when Mary saw him. This week he weighed 131, which is a healthy weight for James, but 10 pounds lighter than last month.

Next week, the wheelchair vendor will come to measure James for "modifications". He has a fixed-back wheelchair, but now he is too weak to sit up on his own. Probably he will get a harness that will help him sit up. At home or here, he is in an easy chair and can recline.

All I can do at this point is love him and pray for him. I am not functioning at a normal level; I sleep a whole lot and keep very odd hours (note time stamp; this is early). Mary manages better, but she is also tired and depressed. Please pray for us all. Thanks, B

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