Thursday, January 27, 2011

No real answers to my questions

Since the Monday before Christmas, Rick hasn’t been feeding himself well at all. Sometimes he feeds himself a few bites but then I have to remind him that he is eating and give him a bite. Then he will take a few bites and forget again. He is very sleepy and seems to want to fall asleep while eating. This is very hard for me because I like to be doing other things while he is eating, like cleaning up the kitchen, etc. If I have to sit with him and feed him most every bite, I don’t get much done.
He went to the VA clinic for his annual checkup, 123010, so that they will pay for his time at the adult day center. I told that doctor about Rick’s change in the past week and a half. He did blood work, including a Keppra level. An overload of Keppra can cause drowsiness. He called me back the next week saying his Keppra level was 90 and the range is 5-63. He told me to omit his evening dose that day.
I was scared to omit it completely because I know that stopping seizure medicine can cause seizures. So I omitted 2 of the 3 tablets he normally takes in the evenings. In the morning when he woke up, he was very seizure-ish. I was afraid he was going to have a seizure. But I got his morning medicine in him before that happened.
I contacted Dr Boggs’ nurse, Valerie, who talked to Dr. Boggs. She says she doesn’t go by the levels but by the symptoms of the individual patient. She suggested I cut back on the Keppra by a half tablet once a day. I have been doing that since then.
For the first week, Rick would have the little starts that I have spoken of before. I am sure they are seizure activity, just not a grand mal seizure. But I haven’t noticed that much in the last week or so. But Rick continues to sleep a lot and still isn’t feeding himself well. Some days are better than others.
Last night, being Wednesday, and having to go to church, I gave Rick his chili for supper as soon as I finished work. I needed to be at church early, because I was presenting my pictures of Africa to the Stars (the girls group). I needed to set up the projector and my computer before church. I started him eating by giving him a bite and then putting the spoon in his hand so he can feed himself. Then I went to do something else. When I came back he was asleep with his head just about in the chili bowl. I woke him up and gave him a couple more bites, put the spoon in his hand, and went to do something else. This continued to happen. I would have to wake him up each time I wanted to put a bite in his mouth.
It was too early to give him his medicine, so I decided to take some applesauce with me to church and I would give it to him just before church started. This worked fine. He took his medicine well, I thought. During my presentation, Rick started moving his chair all around. I put my hand on his to try to calm him while I was talking. Then I noticed something wet drip on my hand. I thought his nose was running. I wiped it but it wasn’t very wet. Then I noticed he was drooling a very chalky looking substance. I realized he must not have swallowed all of his pills and one was dissolving in his mouth and drooling out. That means he didn’t get all of his medicine…but which pill did he not get? I didn’t know what to do.
When we got home about 9:30 pm or so, I gave him the rest of his chili. As he was eating it, with me feeding him mostly, I debated what I should do about his missed dose. I finally decided to give him at 25 mg tab of his Topomax. I figured this could help him but not overload him.
We got to bed about 10:30 pm, rather late. I was very tired from pulling on him all evening. He has become very resistant to everything again. He’s not being mean…he just catches everything. So when pulling off his coat, he holds his arm tight to his side so it won’t slide off. He has been bending over at his waist much of the time, not standing up straight at all. He walks that way and stands that way. He did that in church while we were singing. I tried to get him to step back and forth to the music with me like we usually do but he was leaning down so much it was tiring my arm out to hold him. So with all that, I was tired and looking forward to sleeping.
Rick woke up at 12:15 am and I took him to the bathroom. I put him back to bed and at 12:44 he was awake again. Very restless, sitting up in the bed, grabbing the covers. I tried to hold his hands and calm him down. I didn’t think he needed to go to the bathroom since he had just gone. Finally, after struggling with him until 1:09, I took him to the bathroom again. He went. He was awake again at 2:55 am and I took him to the bathroom. I usually lay back down waiting for him to finish. This time I went to sleep and didn’t hear him again until 3:55 when I put him back in the bed. You would think he would sleep the rest of the night. But he didn’t. He was up again at 5:30. Most days I get up at 5:30, but I was too tired to get up then. I decided to set my alarm for 6:30 instead.
When I woke up then, I was worried that he still might have a seizure. So I decided that I would crush his pills and put them in maple syrup and give them to him before he got out of bed. I sat him up on the side of the bed and tried to give him his medicine. He wouldn’t open his mouth. Finally I got some of the syrup and crushed medicine in his mouth, but then he wouldn’t swallow it. I got some water to give him, thinking that would help him swallow, but it didn’t. I got a cracker, thinking that something to chew would help him, but it didn’t. So I took him out to the kitchen to give him his cereal, hopefully getting him to take his medicine. I was going to let him spit out what was in his mouth and start over. Just as I got something for him to spit in I saw him swallow. I was able to get the rest of his medicine in, praise the Lord!
As I looked at the clock I realized I only had 30 minutes to get him ready for his ride to the day center. So I decided to let him eat at the center and I wouldn’t feed him here. We went to the bedroom to get dressed for the day. I put him back on the toilet since he hadn’t gone since 5:30 am (it is now 7:20 am) and I realized it was just going to be too much of a struggle to get him ready for the bus. Also, I just wasn’t sure if he had the right medicine in him and he wouldn’t have a seizure. It wouldn’t be good if he had a seizure on the bus…or at the center, for that matter. So I called and canceled his ride. Today is my late day and I can take him in later when I am ready. And I can be sure he is past seizuring. That was a relief.
We went back out to the kitchen and had breakfast. He fed himself part of his cereal. We got dressed. While I was getting dressed, I put him in the rocking chair in our bedroom. But he didn’t stay there long. He got up and started walking around. After awhile, I noticed he was standing next to the rocking chair bent at the waist, with his hands down at his ankles. I think he was tired out and was sleeping there. I put him in the rocker again until I finished getting dressed. Then I took him into the center arriving at about 9:30 am. He slept all the way in.
What a day!

Wednesday, January 05, 2011

Medication issues?

Yesterday afternoon I got a call from Dr Robbins at the VA clinic. Rick had just seen him on 123010. He told me that Rick’s Keppra level was 90 and the normal range is 5-63. He suggested that we might want to cut back on his Keppra some. He even suggested that I leave of his evening dose for last night. I called Valerie at NCBH and left a message for her about this and sent her an email. I was scared to leave it off completely, but did cut out 2 of the 3 pills of 500 mg each.

This morning, Rick slept until 6:30 am and I had to wake him up. After he went to the bathroom, he was very jittery, grabbing tightly. I was afraid he was about to have a seizure. So instead of getting him washed and dressed first, I took him right out to have breakfast and to get him morning medicine in him. After eating breakfast he seemed to be better. I was able to get him dressed and on the bus without difficulty.

This afternoon I got a call back from Valerie. She said that the level are not very reliable. Since he had just taken his med that morning it could have been at peek performance instead of trough. She said that Dr Boggs usually goes by symptoms rather than blood levels. So I told Valerie that he hasn’t been feeding himself very well since Monday before Christmas, 122110, and has been very sleepy, actually falling asleep while eating. She said she would report this to Dr Boggs and get back to me. She said that Dr. Boggs may have left for the day and it may be morning before she is able to talk to her.