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
Monday, September 24, 2007
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
Friday, September 7, 2007
9/7/07 - A whole new perspective
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
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
Tuesday, September 4, 2007
9/4/07 - back at UCSF
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
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
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