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
Monday, August 27, 2007
Tuesday, August 21, 2007
8/21/07 - weak, bedridden
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
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
Friday, August 17, 2007
8/17/07 - Home, but ...
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
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
Sunday, August 12, 2007
8/12/07 - a while before Taco Bell
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
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
Saturday, August 11, 2007
8/11/07 - tube OUT! James breathing!
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
Friday, August 10, 2007
8/10/07 - ventilator, ICU, keep praying
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
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
Thursday, August 9, 2007
8/9/07 - back in hospital
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
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
Sunday, August 5, 2007
8/5/07 - Still home!
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
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
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