Wednesday, August 18, 2010 6:30 PM, MDT
Just wanted to let everyone know that we have hit a road bump in our recovery yet again. I should have seen this coming since we did have a big move this last week.
It appears that Bill may have had a seizure or more than one. He was acting very strangely and not really "with" it. This happened late Monday afternoon. Tuesday he wasn't any better. The doctor which is a neurologist, ordered a MRI on his brain. Later that day I was thinking about what may have caused this and I realized that someone had told me that his antiseizure medicine was reduced. I pointed this out to the staff and doctors. The doctors decided that he may have had a seizure or multiple ones.
This morning when I came in Bill was quite a bit more alert and "with" it. A promising sign that he is coming out of whatever was going on. His seizure meds were put back to the former level.
He had an EEG this morning as well in hopes that that would shed some light on things.
This afternoon he knew where he was and seemed even more alert than this morning. I am hopeful that he is going to get back to where he was a few days ago.
Unfortunately, mentally, he is far from where he was a few days a go.
Unfortunately, mentally, he is far from where he was a few days a go.
I you still want to visit, Bill would like to see you. Just make it a short visit for now 10 minutes or so. Longer if he is doing well. Evenings are a good time and weekends. Sunday is a dialysis day which take about 4 hours. You are welcome to visit during dialysis it is on the 5th floor at PVH.
Please wash your hands before and after each visit.
Prayers are still needed.
After the EEG and MRI on Bill's brain the doctors think that this new behavior is caused by the medication he is taking for seizures. They are in the process of changing the meds and figuring out the dose. This evening he was still not "with" us. I am hoping that they get it all figured out soon. It is very disturbing to watch him "sleep talking".
On a brighter note he did have a good PT this morning however and makes me feel good that he is still "in" there and I know he is trying to get back to us.
Keep praying!
Keep praying!
We are much improved over yesterday. It would appear that the doctors are right, and are smarter than we give them credit for. Bill has been making sense for most of the day.
What a difficult time. Of course I now know that this was the start of the vasculitis that would eventually end Bill's life. It was so hard to see him in this altered state. He would not "sleep" because his mind was still going. It looked like he was asleep except that he would be talking and moving his arms and sometimes he would try to get out of bed. It was not restful. Bill must have exhausted. Amazingly he would still be willing to do physical therapy and walk. Speech therapy was difficult because he wasn't processing things correctly. Communication was very difficult. I was able to get through to him fairly well.
Bill was trying and he was "still in there". I know it! He tried so hard to beat this, even though his brain was not cooperating. This was the start of the mystery diagnosis. The Dr. wanted so badly to figure it out. Because Bill had so many things that could be causing the symptoms it was quite difficult to figure out what the problem was. Of course vasculitis is so rare that the doctors would not have thought of that. Also if I had known then that he had vasculitis it would have been a very different journey. The outcome would have been the same, only I wouldn't have had the hope.
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