Pray for James

05.06.11 - Another new g-tube

2011-05-07T02:03:00.000-07:00

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

2010-11-04T19:10:00.000-07:00

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

2010-11-02T08:32:00.000-07:00

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 ...

2010-10-31T21:26:00.000-07:00

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?

2010-10-31T08:38:00.000-07:00

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

2010-10-31T00:03:00.000-07:00

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

2010-07-25T15:16:00.000-07:00

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

2010-06-09T01:54:00.000-07:00

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

2010-01-27T03:18:00.000-08:00

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

12.8.09 - Toes are warm

2009-12-08T03:01:00.001-08:00

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

2009-09-30T02:21:00.000-07:00

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

2009-09-01T01:48:00.000-07:00

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

2009-07-08T02:52:00.000-07:00

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"

2009-06-10T00:20:00.000-07:00

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 ...

2009-03-27T00:25:00.000-07:00

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 ...

2009-02-21T01:16:00.000-08:00

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

2009-01-21T02:40:00.000-08:00

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 ...

2008-12-14T14:35:00.000-08:00

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????!!!

2008-07-01T13:40:00.000-07:00

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

2008-01-08T23:12:00.000-08:00

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 ...

2007-12-07T13:06:00.000-08:00

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

2007-11-17T22:51:00.000-08:00

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 ...

2007-11-10T17:16:00.000-08:00

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.

10/23/07 - too long since last post

2007-10-23T17:22:00.000-07:00

Since last I got around to this, James has come off the drug honeymoon it seems we were having. In eight days, he went to the emergency room and was admitted all three times for seizures. Yesterday (Monday), 3 days after getting home, he had to go in for vomiting, not seizures, although there were seizures because he was not holding down his meds.

We are trying injections of Ativan at home, since the oral Ativan has not been stopping anything. Last Friday that kept us from another trip back to the ER. This is pretty unusual, but NOTHING ELSE IS WORKING, and we cannot keep going to the ER for the rest of our lives. We might as well just move into the hospital.

It will not surprise you to know that James's parents are about circling the drain themselves. Mary is taking off a couple of weeks at least, and I am already only minimally functional. We have gotten Michael out of algebra because he has been getting farther and farther behind, and Dad is finally past the point of being able to sit with him the hours it would take to catch him up. We really don't have a fix on Michael's mental state, but it can't be ideal, since he is missing assignments and school regularly. I think we all need to curl up in our respective corners for a while, but James keeps having seizures and life otherwise keeps moving.

Please, please pray that James will be able to keep down his higher doses of meds and that they will work. Pray for the rest of us as well. We are out of fuel and there isn't a station nearby.
Hard to believe it is God's will for us all to collapse. B

9/24/07 - seems like a miracle

2007-09-24T23:34:00.000-07:00

I have no doubt that these results are because of your prayers out there. James has been seizure-free since about Friday, which is better than he has done in months. He is a lot more aware of his surroundings and is awfully glad to be at his home.

About Tuesday of last week, still in the hospital, James told me he needed to go to the bathroom, and I provided an in-bed convenience for him. He has been using that "convenience" since then, and even wore underwear on Saturday!

I am anxious to fatten him up. The tube feedings were carefully designed to do this, but James's metabolism must be on overtime. We will work back into solid foods before too long. I have already cheated a little - bought him turkey and mashed potatoes in the hospital - and he did fine. I don't think he's ever really aspirated solid food, but thin liquids have been a problem before.

Tonight I called him and he was playing video games in his chair. He was very glad to be with Brandy, who takes such excellent care of him. We still have some things to work out, like delivery of his new formula and a feeding pump. I can't tell you what a relief it is to have him at his house and doing well. We hope to get the diagnostic stuff going before too long, but we don't want to wear him out. Thank you all, B

9/17/07 - Prayers being heard

2007-09-17T21:57:00.000-07:00

James was a whole lot more lucid today, told Mary (with much effort), "I want to go down." Mary asked him if he wanted to go outside in a wheelchair and he nodded. That they could not accomplish, but James did sit in her lap for a while. He seemed to focus better on TV and was not thrashing about. Whatever you're doing, it's working. Thank God! Long way to go, though. B

9/14/07 - after a week with James ...

2007-09-14T23:14:00.000-07:00

I am utterly spent, and merely dragging myself around. I did not wake up until 3.10 this afternoon, so Michael did not make it to school. Of course, he could have woken me up ...

This will be brief as it is hard to write. Sunday night, I went to be with James in his room in the Epilepsy Center at UCSF. It certainly is hard to sleep with a spotlight on James all night (so they can see him on camera), but that was the least of the troubles. I don't think he had any seizures that night.

All day Monday and part of the day Tuesday, James whined and complained about how sick he was of the hospital and how he wanted to go home "right now". Those of you who know James know this is not normal behavior at all. I don't blame him for being sick of hospitals, but it is not like him to complain. Tuesday afternoon, he went into sort of a non-responsive, non-verbal state, and has only occasionally emerged from that with a laugh or two. It appears he watches television some of the time, and he tracks with his eyes the people in the room, but he does not answer with anything when spoken to and does not speak. The neurologists don't believe this has anything to do with the medication and have not heard of any syndrome that would cause this. They have urged us to be patient with the increasing of his current meds, saying that the liver may not have cleared out the old stuff yet, and that things may get better when med levels are where they are supposed to be.

Sadly, James is still having quite a number of seizures, most often at night. Tuesday after midnight, he had four seizures, then two Wednesday, two Thursday, and SEVEN on Friday (all generalized). They have not been giving him Ativan to stop the seizures, because they need to know whether the other meds are working. From now on, though, he gets Ativan after three generalized (grand-mal) seizures.

Another disturbing aspect of all this is that the doctors think there is something, as yet undiscovered, that is causing James to lose his abilities and have seizures, and we don't know what that something is yet. James has been assigned to an internist who is brand-new to our HMO, and we are trying to figure out how to approach that (i.e., get a more experienced and committed doctor on board), so we can try to get him better before he is completely gone.

For now, James lies in the bed and stares. He is fed everything by a tube into his stomach. I feel as if I have lost him already, but we are trying to be faithful to him and to God in these difficult circumstances. I will take up the role again on Monday night; it looks as if he will be at UCSF throughout next week. Keep praying for answers, God's demonstrated love and support, and for James to feel safe and loved. B

9/7/07 - A whole new perspective

2007-09-07T21:11:00.000-07:00

Well, it's not really good news. The EEG shows brain activity all over the place when seizures occur, so surgery is definitely out. It also showed "sub-clinical" seizures that we do not know are occurring.

The doctors at UCSF tell us that it is not the seizures that are causing James to waste away, but rather something that has not yet been discovered causing the wasting AND the seizures. We were encouraged to work with our internist to do a "complete workup", in an attempt to uncover whatever the problem is. As we look back, we realize that the decline has been going on since early last summer. We could have a very long road ahead in finding the problem. I am not sure I want to know the problem, if it is something that should have been easily caught and fixed long ago, but that's just me.

The only problem now is that James does not have an internist that he has ever seen. He had one he had seen a few times, but she is gone, and he was reassigned to someone else. We are using our various contacts to try and find a really capable doctor to spearhead this effort. We've been very cooperative with the assignment of PCPs over the years, but now is not the time to accept the most recently hired doctor from the third world.

Mary tells me James was more awake and a little stronger today. He also had "a major #2" according to Mary, which I know is as exciting for you as it is for me. Perhaps the new formula is helping. James went off all his old meds and on to two that are known to be good for his kind of seizures. No seizures today, but the old drugs aren't out of his system yet.

James may be in UCSF several days next week, so I am probably taking over hospital sitting duty. I'm not really very good at that, but I will do my best. Pray for us all, as always. B

9/4/07 - back at UCSF

2007-09-04T19:31:00.000-07:00

Over the weekend, James had a fairly severe seizure episode, and Mary took him to the local hospital. He got transferred to a hospital in Fremont, which was like a tomb the day before Labor Day. He was in ICU, stable but very weak and sleepy. We had been reserved a bed at UCSF's Epilepsy Center (again) for (more) 24-hour monitoring. I don't know whether this was our doctor's last-ditch effort or what, but we are pleased for the chance to discover the cause of these seizures. Didn't happen last time, though, so I don't know, and given James's condition, whether he could undergo surgery if they find something is a huge question. Please pray for answers. James is 45.5 kilos (right at 100 lbs.; still losing), and he has spates of apnea, although he will breathe if we remind him.

Today I just gave over to the depression and got absolutely nothing done. I am going to go downstairs and see if my other son wants some dinner. If we get energized by that, maybe we will do some laundry; otherwise, I will just stare at the stuff lying around until I get sleepy again. This is no way to live. B

8/26/07 - seems better

2007-08-27T01:26:00.000-07:00

The visit from Uncle Steve over the weekend did a lot to perk James up. He has gotten out of his bed more, into an easy chair. Last night he woke up screaming for Sarah or someone - my guess would be dreams or perhaps the side-effects of one of his meds or both. Much family spent the afternoon with James on Saturday and that seemed to make him happy. Friday Steve and I went over and repaired the broken access door to the supports of James's house. It seems that some children had decided that was a good place to play. They were messing with the door again Sunday and playing on James's wheelchair lift. They would not leave when caregiver told them to, so I called the police. I hate doing such old-person things, but I AM old, and it is dangerous under that house and on that lift.

James has a doctor's appointment tomorrow (Monday). The doctor has set us an appointment at UCSF for more round-the-clock monitoring. Mary finally told him that we were discussing hospice and other options for James (he's not ready for that yet), and he decided that there was something more we could do. I am not sure he gets that James is wasting away, and that this is not just a neurological problem, but the seizures cause all of the rest of it.

James had the start of a bed sore, so he has to be turned a lot and medicated with "barrier" cream. Like I said, he seemed stronger - could support a little more of his own weight on his legs, could pull himself up in bed, etc. We are determined to keep him out of the hospital as much as we can, and do what we must to stop seizure episodes. That means we must use our discretion in using the emergency meds. James went to ER last Wednesday, but we took him home again.

Mom and James were talking about the tube down his throat (ventilator), which he hated. He said he did not want that again, and Mom asked him if he was ready to go see Jesus. James said no to that. I guess he is content enough in his situation. Pray for his strength and healing. Thanks, B

8/21/07 - weak, bedridden

2007-08-21T12:40:00.000-07:00

One of the caregivers had strep throat, so Mary spent the day with James Sunday, and I spent Monday with him. Before I arrived, James had had a short, complex-partial seizure (staring, some twitching in the face, some vocal sounds like "uh, uh"). Speaking of complex, the feeding and medicating schedule for James is not for the faint of heart. Every two hours, something is going in that feeding tube, meds or nutrition. I got training, so knowing how was not a problem, but the feedings take about 30 minutes if you let them happen by gravity instead of pushing the liquid in. I had a very difficult time finding a comfortable position, and then whatever position rapidly became uncomfortable. James does not complain at all, but there was one exception today.

About 9.30 am, James said "baf-room" (not urinal; enough said). This was a joyous event, because this particular process had not taken place for some days. I bodily carried James into the bathroom and set him on the toilet, where he met with success. While he was sitting, he made a pained face and said "Owwww!" a couple of times with feeling. I asked what was wrong, and he said "My bottom hurts." I asked him, "Sitting bottom or pooping bottom?", and he replied, "Sitting bottom." His little rump is so skinny it looks like hip bones with a couple of half-onions attached! He's kind of bruised back there, too, from lying around in bed all the time. This broke my heart - may have to get him a padded seat.

At 11.00 am, he went into another complex-partial seizure. The one earlier in the day stopped on its own, so I waited, and waited. About 90 minutes later, I gave him 1 mg of Ativan under his tongue, but nothing happened. Thirty minutes later, I dissolved another milligram and put it in his feeding tube - still no response. Finally, when the seizure had been going nearly 3 HOURS, I pulled out the big gun (syringe) and gave him 20 mg of Diastat (Valium gel). Finally the seizure stopped, and in a few minutes he asked me to turn up the volume on the television. Whew! Complex-partial seizures are not really harmful to James, but three hours is ridiculous. He slept most of the day after that.

He's been out of the hospital 5 days now, but James has lost a lot of ground. He is still the sweetest boy I know, and he does not complain at all about his situation. All we can do right now is be there with him and love him. We are very sad; pray for all of us. B

8/17/07 - Home, but ...

2007-08-17T20:26:00.000-07:00

James came home from the hospital yesterday. A hospital bed, a bedside toilet chair, and an oxygen concentrator were delivered to his house, and he is set up in the front room with the TV in sight. He is weak but reasonably happy.

He did not pass either swallowing exam in the hospital, so he is solely on tube feedings. Last night, Mary stayed with him, and he had two grand-mal seizures. She gave him Diastat (Valium rectally-injected gel), and that did stop the seizures. We are over here now, and he is reasonably cheery.

We don't have many illusions left, but for now he is sort of stable. Thank God for his caregivers and doctors and wonderful nurses. Keep praying that he will gain weight and get stronger. Pray for his parents also, who are also pretty weak and depressed. B

8/12/07 - a while before Taco Bell

2007-08-12T23:44:00.000-07:00

I assume James will have some pureed food tomorrow, which he doesn't mind at all. He has been having tube feedings around the clock, and hyration, and all systems seem to be "go" if you know what I mean. He is in a private room, out of the ICU, with no monitors connected. Today he smiled a lot more and was glad to see his brothers and friends. When he got sleepy, he pretended he was asleep, then it became so. (We can tell when he is faking because his eyebrows are raised and the lips are pursed. When all that relaxes, he is out.

We had a real scare last week, and whether we had a miracle or not, we are glad to have James for a while more. We have no idea what will happen for him, but today he is cheery and feeling well enough to tease brothers and smile. B

8/11/07 - tube OUT! James breathing!

2007-08-11T11:11:00.000-07:00

There was some speculation (correct, it seems) that James's meds from Thursday were suppressing his breathing, and that he might do better once they wore off. Whether that is the case or something else, James is now breathing on his own, and I assume he will need some Taco Bell. More as I know it - going to the hospital right now. B

8/10/07 - ventilator, ICU, keep praying

2007-08-10T23:40:00.000-07:00

Thursday morning James started having seizures. When Mary got there, his breathing was extremely shallow, his pulse ox was 68% (very low), and he had five grand-mal seizures in rapid succession. Mary called 911 and they took him to the local hospital in Pleasanton, where they intubated him and put him on a ventilator. They gave him a tremendous amount of Ativan, Valium, and Versed. He was breathing some on his own and seemed to improve. When they considered him stable, they transferred him to our usual hospital in Walnut Creek, where he is in the ICU. He has been running some fever and seems to have aspirated something

This afternoon we were given the news we knew would come someday. To keep the seizures under control, they must give him lots of Ativan, which suppresses his ability to breathe. If they lessened the meds so he could breathe better, he would begin to have seizures. They tested him this morning to see if he was breathing on his own - he wasn't. The hospital-based doctor told us that it was unlikely that James would ever come off the ventilator.

We met with the doctor, the social worker, and the respiratory therapist. They all said that James could stay like he is indefinitely, but that is not what we want. He has some lucid moments and can nod or shake his head. He can squeeze hands and seems to be reaching out for hugs, although his restraints won't let him move his hands that far. We have the support and love of our best local friends, and the prayers of many, for which we are very grateful. Matthew and Jill are spending the weekend with us.

No decisions will be made until next week, after we get the perspective of our neurologist as to whether some different level or combination of meds is worth a try to give James a little more oomph.

This news is hard, but James has been on a steady decline over the last ten months. He has been in God's hands since day one, and that is not changing. Pray for right decisions, for lack of suffering, and for sweet James's comfort. Love and thanks to you all. B

8/9/07 - back in hospital

2007-08-09T11:31:00.000-07:00

I don't have the details, but I know Mary received about 5 calls from James's house during the night, and I know she went to take him to the hospital. I gather from what I heard that he got loaded with all the Ativan we were allowed to give him, and maybe a little more, and he was still in a complex partial seizure.

This occurred after the most discouraging appointment with the neurologist yesterday, in which he told us surgery is not likely to help James, increase one med, and don't give him so much Ativan! At this point, Ativan is the only weapon we have, because none of these drugs we have been patiently trying are working.

I had sort of agreed with myself that I would quit my job if James couldn't stay out of the hospital for 4 weeks. That was optimistic, maybe, but it has been only 1-1/2 weeks with near-constant seizure activity. Someone is going to need to be available to deal with James, and Mary starts school in a couple of weeks.

The only thing that got me out of bed this morning is the prospect of our house cleaner's arriving and finding me in the throes of torpor, without any money to pay her. I am depressed beyond description. Keep praying, please. B

8/5/07 - Still home!

2007-08-05T00:19:00.000-07:00

James continues to have nearly daily seizure activity, but if I am remembering correctly, he has had only one generalized (grand mal) seizure this week. He has been on Ativan full-time, and that seems to have limited his seizures to complex partial ones. They are a whole lot less serious, but still he is having them, and is remaining drugged a lot of the time.

Friday night, Mary and I went over to James's house, had dinner together, played games, watched TV, etc. We decided that going to his house, where all the equipment and meds are, was a lot easier than his coming to our house to spend the night. We went for a walk around the park and dangled our feet in the cozy pool. Mary went home about 10.00, and James and I played Duck Hunt on the old Nintendo until nearly midnight. Sleeping with him was not an ideal situation - at 1.30, he scooted me out of the bed, onto the floor. About the time I got comfortable there (4.00), he needed to go to the bathroom quickly, so I grabbed him and ran. (We made it.) About 4.25, he started with a seizure, and I had to give him more Ativan. I was wide awake by then, finally going to sleep by 6.00. One alarm went off at 7.00, another at 7.30. I had a very long nap this afternoon and may be starting to settle down now. We went to a memorial service in the Central Valley, and James continued to have seizures for a while with his caregiver at the ready.

All in all, things are "not serious", I guess, but James continues to have no real quality of life. He's not gained any weight since the feeding tube was installed, but he seems a little stronger. We are going to the doctor next week, and the question becomes, what now? The two new meds don't seem to be working any better - the only thing that helps (some) is Ativan, and he may be building up an immunity. Pray for wisdom, for advancement toward some root-cause answers, and for continued patience. Also pray for Mom and Dad, and our wisdom in knowing what to do if things remain this intense and high-maintenance. We are into our 11th month of crisis mode, and we are wearing out. Both of us have wondered whether one or both of us need to quit, but that is not very financially viable without catastrophic changes. I am a little frustrated and morose and a lot worn out. More soon - love to all, B

7/26/07 - Home!

2007-07-26T18:36:00.000-07:00

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

2007-07-24T00:20:00.000-07:00

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

2007-07-21T09:47:00.000-07:00

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

2007-07-19T00:32:00.000-07:00

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

2007-07-17T15:22:00.000-07:00

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

2007-07-17T14:25:00.000-07:00

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

2007-07-17T14:10:00.000-07:00

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

2007-07-16T12:58:00.000-07:00

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

2007-07-14T23:26:00.000-07:00

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

2007-07-13T23:25:00.000-07:00

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.