Sunday, September 26, 2010 4:22 PM, MDT

WE ARE HOME!

Friday, October 1, 2010 9:39 AM, MDT

Bill has been hospitalized again, with a possible stroke. He is in Poudre  Valley Hospital in Fort Collins.

Friday, October 1, 2010 7:40 PM, MDT

The day has been full of mysteries. The doctor doesn't think that he had a stroke but a seizure. He has given him an anti-seizure drug and ordered more test. This afternoon while Bill was sleeping he started to have some sleep apnea and the doctor decided to move him to the ICU for observation.

He was conscious earlier today and responding to me and Jalyn.

My friend Kerry decided that Kayla should come and see her dad and has gone to Grand Junction to pick her up. He will take her back on Sunday.
Thanks for the prayers.

Bringing Bill home... Bill's mother and brother, Ken, were here. They helped me get Bill home. Ken went to pick up Bill prescriptions for me and his mother cooked a delicious dinner. It was strange to have Bill home and I wasn't sure how I was going to do it. I had arranged for some in home health care to come in but they were not suppose to start until later in the week. Bill's family went home on Tuesday.

 It was hot in the house and I think that it messed with Bill's head. I wonder if the heat contributed to the swelling that was going on in his brain. It kind of makes sense because we noticed a change when he would spike a fever. Anyway he did have some pretty major confusion over the few days he was home. I had a hard time getting him to cooperate with me a few times. It was extremely upsetting for all. I was thinking that maybe I should not have brought him home.

On Tuesday, Bill had dialysis and an appointment to see if we could get him some help with his hearing. I was able to get him to dialysis with out any trouble. His head seemed pretty clear during dialysis. He actually said to me that "this is very inconvenient, we don't have to do this". I said yes you do or you will die.(pretty telling now) The ear appointment didn't go as easily as I had hoped. Bill became very confused and not cooperative. I was able to get him to the appointment and he did cooperate in the office. (all he had to do was sleep). I managed to get him home, but that was not a great evening as I had a hard time getting him to bed. He just did not know what was going on and of course I had no idea that he was having strokes and it was out of his control.

Wednesday was a good day! I had hope again that he would improve and get better. I wasn't sure how much better he would get but I did have hope that he would have a quality of life. He actually helped me with some very small chores, unloading the dish washer and folding some towels. He enjoyed being outside and we took a walk down to his garden. He told me it was good to be home. He also gave me a hug and kissed me on the forehead.

That night in bed he was talking in his sleep all night long. I could not get him to relax. He would stiffen up when I would touch him. Something was not right. The next morning he got up and dressed for dialysis. Right when it was time to go something happened(a stroke, but I didn't know that) and he became totally uncooperative. I practically had to carry him to the truck to get him to dialysis. I was in tears, Jalyn was in tears and Bill  had no idea what was going on. It was awful!! I want to erase that memory from my mind. I was able to get him into the dialysis center and told the nurses that I had a hard time. They were very sympathetic and wanted to help me. I left him in dialysis and ran some errands. I was very upset and was unsure of my decision to bring Bill home.

When I went to pick Bill up he was unable to walk or talk. It appeared to me that he was having a stroke. It was decided by me and the nurse that Bill  needed an ambulance. I was feeling a little numb. I just knew that I could not take him home. I could not have even gotten him into the truck, if I could have, then what?

Bill was taken to Poudre Valley Hospital. I didn't know what to do. I called my friend and she was able to come sit with me for a while. Another friend came and took the groceries that I had just bought and took them home for me.

Bill was admitted to the neuro ward with a possible stroke. There were a couple of ideas of what was going on. The first thing they thought was extra fluid on his brain. They were planning on doing surgery that night. When the neuro surgeon looked at the brain MRI's he said that was not the problem. He came and looked at Bill and said that he had a stroke, Bill's right side was completely paralysed. I was thinking that Bill would not ever be able to recover from a stroke. I just knew that there was no way that he had the energy to go through that. I had just spent 2 months watching many stroke victims recover while we were on the rehab floor and I knew he didn't have any more left in him.

Bill was semi-conscious and was reacting to me and my friends, Jon and Faith, who were by my side immediately.

Jalyn stayed with a friend as I didn't know how long I would be at the hospital and I didn't want her to be alone. It was a late night for me.

On Friday the doctors didn't think that he had a stroke but was having seizures. The symptoms and brain scans and such were not making any sense to the doctor. At one point the doctor was standing over Bill and said "this just doesn't make any sense!" He was frustrated. Bill kept stopping breathing, I alerted the staff and all of sudden there were at least 6 people in his room caring for him. The doctors decided that it would be best to move him to the ICU. I was ok with that because there is no better care in the United States than the ICU. However, I was scared and worried and everything at once.  It turns out that this was the beginning of the worst time in my life.

Sunday, September 19, 2010 8:44 PM, MDT

It has been a very busy last few days. Thursday morning Bill had a fever and was very disoriented, the fever was down in a hour or so and his head cleared considerably and he had a pretty good rest of the day.

Friday morning he was again very disoriented, he took a nap and woke up in much better state of mind. He talked to the OT about hockey and how to hold your stick. The afternoon he enjoyed being outside with Jalyn and I.
Since I am interested in doing in home dialysis, Bill needs a different catheter for dialysis access. They planned the surgery for Saturday morning. Bill had another fever so they postponed the surgery and decided to do dialysis on Saturday instead of Sunday. The surgery will take place on Monday sometime. It is a minor surgery but I am nervous anyway.
The doctor also decided to do an MRI on his brain to help determine why Bill's head seems to be so mixed up. Turns out he most likely has had a very small stroke. The doctor isn't sure why that would happen and wants to do another test to determine what exactly what happened and how to treat it. The doctor also thinks he may still be having lingering inflammation due to the meningitis. That may be contributing to his confusion as well and could be treated with an anti-inflammatory.
Sunday Bill had some good therapy and his diet has been advanced so he has more choices of foods! YAY I also was alowed to bring him home for a few hours. He did really well and was remembering his patio. He also ate some home cooking and seemed to enjoy it. Next time I bring him home it will be to stay, (I hope)

Monday, September 20, 2010 8:39 PM, MDT

Bill's surgery went well and he woke from the anesthesia quite well. The doctors and nursing staff at PVH were so kind to me when I  express my concerns and I believe they took good care of Bill during the procedure. I will probably know the results of the brain MRA tomorrow. I am wondering if he had had a small stroke earlier as well.

Thursday, September 23, 2010 8:51 PM, MDT

The MRA came back normal. Apparently the stroke was just a rogue blood clot going to the brain. Bill has had a good couple of days, today he played hockey again and was "dribbling" the hockey puck(ball) down the hallway. That took a lot of coordination for him.

We will be bringing Bill home soon. That makes me both happy and scared. But, I think that he will do well at home.

Keep us in your prayers we still have a very long road to go.

I now know that this is the beginning of the end. I think it is good that I didn't know that he was dieing. I would not have had the hope that I did. The staff was very hopeful that he would do well at home as well. If we knew that he was dieing would he have been allowed to stay at the hospital? Would I have been forced to take him home or a nursing home? I don't know for sure but I am pretty sure that he wouldn't have been able to stay in rehab. With his needing dialysis it would have been difficult to take him home. My decision to take him home was made with the idea that he would improve, not get worse. So, if I knew that he wasn't going to improve I don't know what I would have done. It was difficult sometimes to get Bill to cooperate because (I know now because of him having strokes) he was confused and sometimes didn't know were he was or what was going on. Getting him to dialysis may have been nearly impossible at times so where would we have gone if we knew?

It was very strange that at times his mind was good and others not good at all. I would like to know why? I think the doctors may not even know the whys. Maybe some day I will get the chance to talk to the doctor and ask him. Not that it really makes any difference. It would just be my curiosity. The fevers were never explained either.

Bill knew he was home those times that I was allowed to take him home and he did really good then. He was very cooperative and it did not seem like it would be hard to bring him home. I think it made him happy to come home, even if he didn't remember it the next day.

 

The surgery that Bill had that day made me very nervous. I am not sure that Bill knew what was going on and I was scared of the anesthesia and what it may do to his mind. It turns out that it seemed to clear it considerably. He seemed to know where he was and what was going on. I mentioned this to his nurse and they saw the improvement too. I have no idea what that means now or if it means anything. It just gave me some hope.

 

I think that I was very naive about what it would take to bring Bill home and care for him. I just realized as I write this that everyone, including the doctors, thought that he would improve and get better. I was going with that I guess. So things would get easier over time. Also I was very tired of the hospital and the schedule was starting to wear on me. I just couldn't keep it up. It was also very, very hard on Jalyn. I had asked the nursing staff how much longer they thought that Bill would have stayed if I had not pushed for taking him home, and they said probably only a week longer. If I had not pushed to take him home he would not have gotten to go home. He would have had the stroke in the hospital and never gotten home. Sad