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
Friday, December 7, 2007
Saturday, November 17, 2007
11/07/07 - very bad day
James was dropped off mistakenly yesterday at our house (we had planned to take him on Sunday and keep him all week), but we had a very nice day with him. At about six this morning he started to have many, many generalized seizures. Mary ended up giving him 6 mg of Ativan in all, and the seizures stopped. He has been very doped up, feverish (could be the seizures or something else), and very slow to respond. About 5.00 pm, Mary was ready to take him to the ER, but I talked her into waiting a little longer and he got better. He is still very sluggish and has had a very bad day, but his fever is down, and I just heard him talking a little bit. (I was right i was right i was right i was rightiwasrightiwasrightiwas RIGHT. I'll say it to myself because I will not likely hear it from anyone else.)
Even more than usual I ask for your prayers. Mary and I are both exhausted and feel incapable of handling all of this. The sad thing is that no one is equipped to do any better. The ER would just monitor him; a medical-based group home would not take him because his condition is unstable; the staff at his house does pretty well, but not if he is having this much trouble. Has God produced or allowed an impossible situation? I think not, but it's looking that way at this moment.
We have been blessed by some dear friends and colleagues at Mary's school, who have provided some wonderful food for us. If you are one of those, this has been a star in your crown. Tonight I made quite a bit of food - I ate a lot, Mary ate some, Michael ate nothing. James got a can through his tube - all he can handle right now.
Off to bed. Love you all of you - keep praying. B
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
Saturday, November 10, 2007
11/10/07 - not really worse, but ...
Not really better. It is a real balancing act to get all meds in him, along with anti-nausea stuff, and get him to hold down his food. Friday night was fine, but Saturday afternoon James lost his lunch. Mary is taking a leave of absence from school - she finally wore down to nothin' (like me). Pray that we will have the energy to do what we must.
Tuesday, October 23, 2007
10/23/07 - too long since last post
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
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
Monday, September 24, 2007
9/24/07 - seems like a miracle
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
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
Monday, September 17, 2007
9/17/07 - Prayers being heard
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
Friday, September 14, 2007
9/14/07 - after a week with James ...
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
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
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