Sunday, August 22, 2010 8:15 PM, MDT

Well, sometimes doctors know their stuff. Bill has been taken off the anti-seizure drug that was apparently causing the altered mental state. He is taking a much smaller dose of another drug, lets hope for no side effects. After dialysis, Bill was, mentally, pretty much back to where he was last week. It is amazing what drugs can do to your mind. The drug even effected his swallowing and he has gone backwards in that area. He should get that back pretty quickly I think.

Tomorrow he is back to a full therapy schedule.

It has been a very tough week, with Kayla being off to college and just Jalyn and I here to cope with the changes in Bill. But we made it through and we will have other days that don't go as we expect and we will get through those as well.

 

Tuesday, August 24, 2010 7:46 PM, MDT

We are still dealing with some altered mental state. I suspect the medication for seizure and am working with the doctor on that.  It is very frustrating! I am hopeful that we will get it figured out soon. Bill said to me tonight that he hopes his mind is clearer tomorrow. So do I because that would mean that I was right! If I am not we will keep searching for the answers.
Thanks for all the support it means a lot.
Bill still likes to see people even if it is for a very short visit. Even though he may be confused he has known everyone that has stopped by and he brightens up every time.

 

Thursday, August 26, 2010 8:26 PM, MDT

Drugs can save lives and really mess things up! Bill has developed a bladder infection. Last night they started anti-biotics. This morning he had a bad reaction to one or both of them. One of the anti-biotics he had had a bad reaction to in Montana. I remembered that and told the doctors. We thought that maybe Bill had a seizure this morning, but an EEG proved that he didn't have any. One more piece of evidence that he doesn't need the anti-seizure drugs. The anti-biotics have been changed to one that is less harsh and I think that Bill had this one before and tolerated it well.

As for the anti-seizure drug, we are planning on reducing the dose and trying to take him off of it completely over the next few days.

This has been an incredibly long and exhausting week! Keep the prayers coming!

It was so weird that at times Bill would be very clear and not in that mental state. It was those times that I held onto. I kept thinking that one of these days he would just stay in that clear state of mind and we could get on with the healing.

The doctor and I got along quite well. He listened to my concerns as well as agreeing with me most of the time when I would bring something up. When I asked what the risk of taking Bill off the seizure meds altogether was, the doctor looked at me and said " we are on the same page, that is my next step".  Having the doctor on my side was so comforting after all he is a neurologist and what do I know about anything?

The mix up with the anti-biotics was very upsetting. I was not as pleased with one of the infectious disease doctors. The one that prescribed the anti-biotics that made Bill sick was not my favorite. It turned out that Bill didn't even need the stronger drugs that put him into seizures. It took at least a week for him to recover from that mix up. For the record I don't think Bill ever had a seizure except ones that were caused by anti-biotics.

Part of the reason that I was able to go to the hospital day after day was the staff on the rehab floor. They helped me so much by listening to me. And offering their support.

My emotional state was very fragile during this time. I cried and cried and prayed and prayed. I also tried to be positive for my daughters. I wanted them to stay positive. But there were days when I didn't want do this anymore. I don't know where I found the energy or the power to go to the hospital and help take care of my husband. I guess I loved him too much to leave him there. I signed up for better or worse and I wasn't going leave him. I was going to save him.

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.

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.

 

Thursday, August 19, 2010 7:25 PM, MDT

 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!

 

Friday, August 20, 2010 7:18 PM, MDT

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.

Wednesday, August 11, 2010 10:12 PM, MDT

We have moved to Fort Collins! Bill will be pretty busy with all his therapies but that is what is needed to get him home.

The doctor thinks he will only be there for 1-2 weeks. I agree. He is doing so amazing.

He is still getting dialysis 3 days a week, and his hearing is hit and miss but seems to be getting a little better.

Keep the prayers coming, he still has a long journey ahead and I believe that the prayers are being heard!

Saturday, August 14, 2010 6:39 AM, MDT

  Just wanted to say thank you to all that attended last nights silent auction. Or who donated anything. It was a good night.
Good luck to all the hockey players today and tomorrow and have fun!
I am off today to take Kayla to college. Boy this is going to be tough one.
Her best friends family is going to help me get her there and help get her moved in. I am so proud of her she has been such a support for me during all this. I am going to miss her so  much. But she can go to school with the knowledge that her dad is going to be ok. What an amazing young lady she is and I know she is going to be so successful in whatever she decides to do. One lesson this journey has taught us all is that WE CAN DO ANYTHING!
I will be back sometime Sunday. Bill's brother is here to take over for me. I hope they stay out of trouble! I think Bill has charmed the nursing staff at the hospital yet again. Every where we have been he has wrapped the staff around his little finger.
If you want to visit this weekend feel free but check with at the nurses station before going on down to his room. Remember too many people in his room can be a little much for him. Plus it is a very small room and it gets a little crowded. Today, Saturday he does a have therapy in the morning but his afternoon is fairly open. Sunday I know he has dialysis, but I think it may be a day off of therapies.

One big thing happened yesterday! Bill has been cleared to eat and drink whatever he wants. He passed his swallow test! I am so happy. It is a big step toward home.
Thanks for all the support everyone, it has meant so much to us.

Monday, August 16, 2010 7:38 AM, MDT

I got Kayla off to school, it was tough one for me.

Bill had a fairly uneventful time while I was gone. Tom did a good job taking care of him for me. Bill had Sunday off from therapy and probably needed the rest. Today it is back to work for him.

Jalyn is taking her driving test today. Hope it goes well.

This is so hard for me to read these post and think about all this. I just keep thinking about the fact that Bill was suppose to be OK. The doctor came to him and told him 1-2 weeks was all that he needed and he could go home. Bill was up to the task. When he had therapy he did more than what was asked of him. He was such a hard worker. I was so proud of him. I was excited for him.

Being cleared to eat was a big thing! It was one of the goals to going home. He was having a hard time with it however, nothing tasted right to him and he wasn't hungry. Bill was still getting nightly tube feedings so his appetite was not so good. He told the nurse that he didn't want the tube feedings any more. Apparently stopping the feedings are not up to the patient, because they would not stop the feedings. The reasoning was he wasn't eating enough calories to support his needs. I wasn't too worried about it thinking when we got home we would not have the tube feedings and he would get hungry and everything would take care of it self.

Bill was having episodes of vomiting. There didn't seem to be any rhyme or reason to it. We could not pin point a pattern or reason for it. It was a concern for all, the nurses seemed to be the most concerned. It continued to be an issue the entire time. We never did figure out what was causing it. Maybe it was the result of some strokes? We will never know.

Taking Kayla to college was so emotional. I was worried about Bill and I was taking my oldest child off to her first year of college. This was suppose to be a family affair. Kayla was suppose to have both her parents helping her move in to her dorm. Her dad was suppose to be there too. Instead it was her best friend's dad. Don't get me wrong the family that helped me was great and I am so thankful that they helped us. Kerry is so funny and had us laughing the entire time. His sister also put us up in her house and fed us. Even so I was in tears when I left Kayla. I had such mixed emotions. I really wanted to get back to Bill and I didn't want to leave my baby all alone. I am not exactly sure how I got through that couple of days. I guess it was that Bill was going to be ok and that I would bring him over to visit when he was up to it.

Thank goodness for Tom, Bill's brother. I love him. He came to stay with Bill  so I could leave and not worry too much. I also think that Tom's wife is amazing! How many women would be so willing to loan her husband to another woman? She is an angel and I love her too.

Monday turned out to be the beginning of a new nightmare. Only I didn't know it then.(that was probably a good thing)