Saturday, October 2, 2010 7:51 PM, MDT

The lumbar test has shown what looks like a brain infection of some sort. They are using a wide variety of drugs to treat it. Bill slept all day and remains in ICU.

Tuesday, October 5, 2010 5:06 PM, MDT

The latest on Bill is that he did suffer a stroke in his brain stem, it was apparently only partial. He is unable to move his right side. The current diagnosis is Vasculitis, a swelling of the blood vessels in his brain. He is being treated with lots of steroids.
Today he has been much more awake and aware than yesterday. He even attempted to brush his teeth.
Don't know what the long term damage will be for sometime.

Saturday, October 9, 2010 3:07 AM, MDT

One of the hardest things
to do is to physically let go
of someone you love so dearly,
but the everlasting love fills your soul
connecting you spiritually forever

Tuesday, October 12, 2010 12:15 AM, MDT

 Bill passed away quietly and surrounded by love, October 11, 2010.

Tuesday, October 12, 2010 7:04 PM, MDT

memorial service 2 pm Friday Timberline Church south entrance

So as I read this there is a glimmer of hope. But I was sure that Bill would not be able to survive nor would he have wanted to. No one that I know would want to live the way that he would have had to. Bill was a man of action, he wouldn't have wanted to live in a bed, in a nursing home.

The day the doctor told me what they had finally found was so sad. I burst into tears. The nurse took me in his arms and just let me cry. Jalyn was with me when we got the news and she was devastated as well. Thank goodness for the nurses that held us and comforted us.

 Arrangements were made for Kayla to come home immediately. I called my good friends and they were at my side right away. Maybe that is one reason why Bill didn't die in Montana, he brought me home so I would have my friends and family near.

On Friday we had a meeting with all the family and the doctors and nursing staff. We met at the hospital. Dr. McIntosh had Bill's MRIs on computer screens in front of us. The doctor started at the beginning, which turns out to be in April. Bill had complained of headaches earlier in the year. He actually went to the doctor. His doctor ordered a CT scan. Bill told me that it came back normal. It did, sort of. Apparently there was some swelling in his blood vessels, but not much. Enough, however, to have a MRI ordered. Bill  did not tell me about this. I was very surprised to hear this. In April of 2010 Bill had what appeared to be a normal MRI. By October he had an extremely abnormal one. the last one that he had showed that Bill had had 7 strokes in two days. He had been having little tiny strokes all over his brain for some time. He also had had a major stroke in his brain stem and his memory was completely damaged. There was absolutely nothing that anyone could do for him. Even if they had found the Vasculitis early on there would have been little if any thing that they could have done to save him.

I had to tell the doctors that I didn't want any more life saving efforts to be made for Bill. Bill's family supported me as well as my own family. Thank goodness for that.

I was first told that Bill would have to be moved from the hospital to another facility to end his time on this earth. I was very upset about that. I did not want to move him again. I was ready to stand at the door to prevent that from happening. Then the doctor came to me and told me that Bill would be staying in PVH for as long as it would take. He said that another facility would not be able to care for Bill's special neurological needs and nor could they care for my emotional ones. I was so thankful for that news. Bill was moved from ICU to a room on the neuro floor. He was well cared for by the staff. They were wonderful in caring for me and my family as well.

Those ten days were kind of like a wake. Bill had many visitors. His family came to say goodbye as well as many of his friends. I had lots of support for me too. The nursing staff was so supportive. Also many of the people that Bill had help him in rehab stopped by to see me. It was all very touching and overwhelming.  I can't thank the people at the Hospital enough, without their support I don't know how I would have gotten through those days.

The day that Bill died was a long one. My kids had decided that they had said goodbye and didn't want to be at the hospital any more. I told them that that was OK. So I was at the hospital with my sister-in-law. She was so good to stay and provide comfort for Bill. I was emotionally unable to spend too much time with him that day. Also, I was busy in the waiting area talking to visitors. That evening when everyone had gone except me, Tom, and Kathy, Bill died quietly and peacefully with us at his side. Goodbye my love. I will miss you!

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 

Tuesday, August 31, 2010 7:59 PM, MDT

Another good day. I believe that we are climbing back up the mountain. Today the doctor decided to end the night tube feedings, so Bill needs to eat and drink enough. It is a little tricky to get him to eat as much as I want him too. I do believe that he will get hungry and  all that will take care of itself.

His physical therapy continues to go very well.
Visitors are welcome to stop in, after 6pm is usually
 a good time.

Friday, September 3, 2010 6:39 AM, MDT

Bill doing stairs. He did these so well! We are still trying figure out the best way for him to get nutrition. It may take a little longer than I had thought. We will get there! He has had a very good week.
Jalyn and I are going to visit Kayla this weekend.
Tom will be staying here and helping with Bill.

Monday, September 6, 2010 8:39 PM, MDT

Jalyn and I had a very nice visit with Kayla this weekend. Kayla is doing very well. She is doing well in all her classes and is loving Chemistry.

Last night, we noticed some swelling in his arm. It was later determined that he has a blood clot in his arm, probably caused by the pic line that was recently removed. He is on the blood thinner Cumadin. We are hoping that this will be short lived.

Bill had no therapy today, it was all on me and the nurses. He had a pretty good day. The doctor is agreeing to take Bill off the anti-seizure meds all together. By the end of the week, he should not be taking any of those meds. He was playing solitaire this evening. I had to help him, but he was understanding what he was needing to do. It was very reassuring to see hi being able to focus. He had Tom, Jalyn, and I in stitches over some bathroom humor. Tomorrow is back to work! Say a little prayer that his head stays clear!

I actually have some anxiety as I write this. It is very difficult to go back and visit this time. I kept thinking that his head would stay clear. Unfortunately It didn't.

I had to go see Kayla, it was near her birthday and I had to be a mom for a few days. It was very hard to leave Bill and it was hard to leave Kayla. I am not sure how I made it through that weekend. I am so glad that I went. Everyone on the rehab floor encouraged me to go, they knew the pressure I was under.

It was so nice to be able to laugh at Bill and with him, he had a great sense of humor and he made me laugh all the time. I really enjoyed spending time with him. While he was hospitalized I enjoyed being with him when his mind was mostly clear. I didn't enjoy it when his brain was misfiring and doing weird things. Of course at the time I didn't know what was going on.

Bill wouldn't eat. It was very difficult to get him to eat. We were working with speech therapy every day to get his swallow back. It was hard work to get him to eat and swallow enough. We, Bill, me and the speech therapist, worked so hard to get his swallow back. I am thinking that the strokes were probably the reason for his lack of appetite and his swallow not being what it needed to be. (I learned that your swallow can be damaged and that there is therapy to help heal it.)

Bill's brother came out and stayed with Bill so that I could leave and visit Kayla with out worrying too much about what was going on back in Fort Collins. I love my brother-in-law and am so thankful for him and his family. I could not have made it with out him.

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)

Saturday, August 7, 2010 7:01 PM, MDT

Bill walked yesterday with a  walker and some support from the physical therapist. He has been asking for more physical therapy, which is really good and they have been giving him more.

Today, Bill had quite a few visitors. He liked having visitors.

Monday, August 9, 2010 9:12 PM, MDT

Bill is doing so well that he is going to move yet again. He will be moving this sometime this week to a Life Skills Rehab Hospital. It will give him the rehab that he needs and it is closer to home for me.

Bill has been cleared to eat real food! He had lunch and dinner today and will be getting 3 meals a day from now on! He is certainly glad about that.

His mind has cleared considerably, and he is pretty much his old self. It is such a joy to hear him joke with us. He also talked to his doctors and is making some of his own decisions. The big thing for him is his memory. He has huge holes in his memory. But I think most of it will come back as he gets home and is seeing everything again.

For those of you in Colorado there is  fundraiser August 13-15.
It is called Face Off Against Meningitis, a hockey tournament and silent auction. For more information faceoffagainstmeningitis.com

Tuesday, August 10, 2010 9:39 PM, MDT

I was asked to post this information.
You can donate to the Face Off Against Meningitis fund two ways.
It is a tax deductible donation.
1.   go to faceoffagainstmeningitis.com and click on the donate button or....


2. To donate by check or cash:

1. Make your check out to “Sierra’s Race Against Meningitis”
2. Mail your check to:
   Craig Stinehour
   2066 Vineyard Court
   Windsor, CO 80550

I will keep you posted on Bill's move tomorrow.

He was doing so well, I was so sure that he would be coming home very soon. It was nice to see him eating and taking care of himself. He was able to get to the bathroom and with minimal assistance take care his toilet by himself. That was the goal to get him home. He had to be able to get to the bathroom by himself and eat enough food. He was so close! He was ready for more rehab, he really wanted to go home.

I remember one Sunday that we spent with Bill at the LTAC. We talked and played card games, Bill actually won. I asked him how to check the oil in my car and he told me. He seemed a little annoyed that I didn't know. (I do know but I was testing him to see what he knew) The speech therapist had Bill read a short article in the newspaper and then tell her what he had just read. He did that and she was impressed. She said that she didn't think he would do as well as he did. His brain was going to be OK.

The hockey tournament brought up lots of questions for Bill. I had to tell him again about the two other men that had died of meningitis. He actually cried and said "why me? I am old and they were so young." (I cried with him as I really had not taken the time to mourn those deaths.) He told me that this was going to change our lives. Little did we know how much.

Monday, August 2, 2010 9:31 PM, MDT

Bill is in the Northern Colorado Rehab Hospital now. He was moved there this afternoon. He has had a tour and an evaluation and is ready to  get to work.

He is not yet eating real food, his epiglottis seems to be paralyzed. Apparently there is therapy for that and we hope to get him eating soon.

He is doing amazingly well the doctors and nurses are very excited for his progress so far so you can imagine where he will be in a few weeks.
  

Wednesday, August 4, 2010 5:21 PM, MDT

Bill had a good day today. He had lots of therapy, he even got to eat some runny mashed potatoes and peaches and thick water. He also had some strawberry shake, that made his day!

His attitude is very good, even though he is getting a little grumpy. I have been told that is a good thing.

If you would like to send Bill cards or letters send them to our house.

If you would like to visit Bill the best times are evening and weekends. You may call the Northern Colorado Long Term Acute Care Hospital to see if he is available for visitors. We may or may not be here.

PLEASE DO NOT BRING FOOD UNLESS JOY OR NURSE HAS GIVEN YOU PERMISSION, EVEN IF HE ASKS FOR SOMETHING.

Thursday, August 5, 2010 9:46 PM, MDT

Bill had another good day.

 Just a note about visiting, don't call the hospital after all. Contact me or one of the girls before you come. The hospital won't give any information over the phone. Too many visitors can overwhelm him and tire him out too quickly.

This is going to be a long journey and Bill will need support for some time.

Thanks for all your support we truly need it.  

Bill was looking forward to getting regular therapy and he really wanted to go home. He kept asking me to take him home, even for a visit. The hospital didn't allow me to take him home even just to drive by. We didn't think it would be long and he would be going home for good anyway so I didn't push the issue.

At the LTAC Bill got to take his first real shower. It took a very long time but he felt so good after. He also decided to grow his beard back. By now Bill was able to sit in a wheelchair and actually move himself around. The nurses let him wander around the hospital by himself and I think that Bill liked having some independence.

Now that I was home it was so hard to leave him at the hospital. I had a hard time being home without him. I was with Bill as much as I could. It was a 25 mile drive from our house, so once I was over there I pretty much stayed.

My parents had been at my house for a week and had to go home. I was so glad that they had been there. My dad made sure Kayla's car was all tuned up and  had new tires, before she took it to Grand Junction. Also my mom cleaned out my camper. I don't think that I would have had the energy to take care of that chore. We also brought home, our cat Cleo.

The speech therapist at the LTAC was really good. She had Bill eating "real" food. Bill joked "I finally get to eat food and this is what I get." He had some pretty unappetizing food, at first it had to be all pureed.

I have the most amazing neighbors! They took care of my yard and garden while we were gone and continued after we got back. I would not have been able to do any of that.I would leave home at 8 am and return around 9pm if I could get away.

Reading and remembering all this is so hard because we were suppose to win and beat this awful disease. It makes me sad that we didn't bring Bill home even for a few hours. I miss him.

Friday, July 30, 2010 9:25 PM, MDT

Bill woke up this morning and was taken off the ventilator and is breathing fine. He was talking to us and trying to figure out where he is  and everything. You can imagine what that must be like. I don't yet how long he will be at the MCR. He will probably go right from there to the rehab hospital.

Keep up the prayers as we still have a very long road to go.

Thanks to all the neighbors who have been taking such great care of our yard. I couldn't get through this with out all the support.

Saturday, July 31, 2010 6:20 PM, MDT

What a difference a day makes.  Bill was patiently waiting for us to come visit him. Physical therapy came for a visit and and had him up and standing with little assistance, a walker and some help from the pt's. He was almost standing to full height!! It was the best that he has done, I was very impressed. He is so ready for rehab.

Bill has to have a minor surgery to replace his dialysis catheter tomorrow. They are putting one in that will work more efficiently and be less visible.

They removed a "pik" line today and put just a regular IV in. Just less and less stuff in him it is a good thing.

We are hoping to be out of MCR on Monday and busy at rehab next week.

Sunday, August 1, 2010 7:40 PM, MDT

He walked today!! He walked about 5 feet with a walker and a therapist steadying him.Then, he walked backwards to his bed, he did that twice and then he walked to his recliner. Later he walked from the chair to the bed and was standing with walker on his own. The nurse said he was stronger than last night and he was impressed. I know I am.

Bill is starting to get grouchy! He is complaining about a lot of things. The doctor says that is a good thing. I spent most of my day arguing with him about many things. I am exhausted.

He has a new catheter for dialysis, the doctors are very hopeful that the kidneys will start working in a month or two.

Tomorrow we will be headed to rehab and I think Bill will be happy about that.

Keep up the prayers I may need them now!

As I read over this journal it makes so sad. I was so positive that he would recover no matter what. Every bump in the road was one that we could get over.

The girls were anxious to see their dad. They had spent every day in Montana with him and it felt strange to not see him. My friends Faith and Jon brought us dinner that night at the hospital. It was definitely different than when we were in Montana where I had no one.

Dr. Petron came to me that morning and looked me in the eye, I was a little concerned, thinking something was wrong. Dr. Petron said to me, after giving me a good look, "good, you got some rest." I then knew for sure that Bill had a very good doctor.

When Bill was just waking up that day he was frightened. I told him that he was going to be ok, and he seemed to believe me.I knew from being in the ICU with Bill in Montana that Bill was breathing ok. I felt very educated that I could read the ventilator machine and know that he was fine.

When the surgeon was talking to Bill about the minor surgery, Bill was able to understand what was going on and told the doctor that he didn't want to have general anesthesia.The doctor agreed to only do a local. I was happy that Bill could make some of his own decisions.

When Bill stood and walked I was so happy! It was strange to see him standing up, it had been so long since I saw him standing. Also Bill's breathing was so much better after the respiratory arrest. Apparently, what ever it was that cause the arrest needed to come out for him to heal completely.

The ICU in Medical Center of the Rockies doesn't have bathrooms in the rooms. All they had was a portable toilet. Bill was very angry about that. He wanted to use a bathroom! He yelled and complained about it. Also he wanted to start eating. He had not been cleared by the speech therapist to eat. Bill didn't care about that and I had to be the one to tell him it wasn't safe for him to eat until he had gotten ok'd by the speech therapist.(I learned that speech therapy does a lot more that speech.) It was exhausting to argue with him about these things when I couldn't do anything about it. I was encouraging however that he was thinking normally.

The kidney doctors were pretty positive that his kidneys would kick in and start working and he wouldn't need dialysis anymore. I was sure of it too. Dialysis is a very long process and Bill was not the kind of person to be able to sit for long periods of time. I was worried about how he would tolerate dialysis long term. I had already been looking into other options.

While Bill was in the ICU, a young woman was admitted to the room next to his. We noticed police come with her. The next day we heard on the radio that a girl that we knew was in a bad car accident. It was very upsetting to know that someone that I knew was in critical condition next door to us. I quickly bought a small gift and had it sent to her. Eventually I spoke the young woman's mother and added her my prayers.

The staff of the ICU at MCR was wonderful. I am amazed at the caring people that I had the opportunity to meet.

Wednesday, July 28, 2010 7:58 PM, MDT

Just letting everyone know the update will be late tonight. We are on our way home.

Wednesday, July 28, 2010 9:21 PM, MDT

It was a big day today! We got the news that we would be heading home this morning! The EMT's got there and in no time, Joy was on the plane with Bill and speeding off to the airport.

Bill is all settled into the rehab hospital. The doctors seem really nice and the hospital will be a good place for us. Bill slept for most of the day which turned out to be Ok. It probably would have been difficult to explain in writing everything that was going on.

The girls are taking their time getting home.

Please don't be concerned if we don't post for a few days. As things get to be more routine and there aren't any big changes, we just won't be posting daily.

Thursday, July 29, 2010 5:58 PM, MDT

So we hit a pothole late last night...Bill had some breathing issues which sent him to the ICU at the Medical Center of the Rockies. Luckily it isn't a long term problem, but he will be here for a couple of days.

The girls got home safely. We are now all adjusting to being home again.

We'll let you know when we are ready for visitors.

Wednesday morning I thought maybe we would be leaving but I wasn't sure. I had a bag packed, I could only take one small bag. When we got to the hospital Bill was asleep and and kind of out of it. I was hearing from different people that we were leaving that day. I finally got a confirmation that we were leaving. I had to send the girls down to the truck to get my bag. Things started moving pretty quickly, the team that would be flying us to Colorado was there and the next thing I knew I was in an ambulance on the way to the airport.

The airplane was a small twin engine plane. I was not scared or excited, I was just numb, not sure why that was except that after everything I had been through not much could phase me at that point.

The flight team consisted of a pilot, nurse and two EMTs.

They had given Bill a sedative before we left. He slept the entire trip. I am not even sure that he knew he was going home that day as he was kind of "out of it" before we left.

On the plane I was given a small seat at the back of the plane by the door. I had been forewarned about the flight by my friend Rhoda. Rhoda's husband was in the ICU at the same time as Bill. He had a brain bleed on his brain stem while on a cross country bicycle trip. They are from Colorado Springs.

She had told me that the plane was very cold and if I could, bring a blanket. She was right. It was very cold and not comfortable at all. I did try and sleep because I really couldn't see out any windows. I am not usually  a good flyer so I was surprised at how calm I was. 

I finally looked out and could see the mountains of home out the window and I nearly cried. We landed very quickly. I was in Loveland Colorado. I don't even know how to explain what I was feeling. I got into the ambulance and the driver asked me about my story. All I had to say was that we were the 3rd meningitis victim.

We got to the Long Term Acute care hospital near Loveland. The nursing staff and doctors were very nice and welcoming. My parents were at my house and were quickly on their way to see me and Bill. It was early afternoon by this time. My dear friend Faith and Jon were excited to see us too and offered to bring me dinner, which I accepted gratefully. Bill was still mostly sleepy and woke up only to say hi to Faith and Jon, and their son. It was so good to see them and my parents after being on my own for so long.

After everyone had left, I was getting settled in for the night as I was staying with Bill at the hospital. As I was trying to go to sleep around 10pm Bill's oxygen monitor kept alarming. I was about to call for help when the nurse came in and in a matter of a few seconds there was a large group of nurses in Bill's room. I am in a dark corner watching all of this not understanding what is going on when I hear someone say "we have to get him to the medical center". I knew that that was the Medical Center of the Rockies. I was terrified! A nurses aid drove me to the hospital and dropped me off at the emergency entrance. It was the middle of the night, I was alone and scared and didn't know what in the heck had happened.

I was soon brought into the ER and was allowed to see Bill.  He was intbated and on a ventilator. I was in disbelief. The ER doctor told me that he had pulled something out of Bill's mouth that looked like a piece of meat and that it appeared that he choked on it. I told him that it couldn't be meat because Bill hadn't been allowed to eat yet.

Soon Bill  was transferred to the ICU. I was looking for a place to lay my head as I had not slept since the night before. Finally the nurse brought me a cot to sleep in Bill's room. I was just getting to lay down when the doctor came in and was going to scope down Bill's airway. The nurse was just asking me to leave when the doctor said "she can stay if she wants to". I did stay and watched the scope of Bill's airway. It was clear. The doctor thought that what had happened was that the flight and move had dislodged some old "junk" in his lungs and he had aspirated it and stopped breathing. His heart also stopped while he was in the ambulance. The prognosis was good, I was able to kind of sleep for a while.

The girls were on the way home that day and was suppose to be home sometime that afternoon. I didn't want to tell them what had happened because I knew how upsetting that would be for them. Of course they are texting me asking how things were going and such. I had to be evasive in my texts back. I wanted to tell them in person.

My parents were on their way to a family reunion when I called them and told them what had happened. They did a u-turn and came to the hospital right away. I was sure at this point that Bill would be ok, because I was watching the ventilator and knew from previous experience that he was starting to breath on his own.

The doctor that was on day shift was Dr.Petron. Dr.Petron had been one of the doctors that took care of the other two men that had died of meningitis. He was very concerned about Bill and really wanted him to recover. He also was concerned for me. He told my parents to "get me out of the hospital". They did I went home for the first time since June, took a shower and ate. The girls got home soon after and I had to tell them what had happened. They actually took the news quite well.

Sunday, July 25, 2010 7:20 PM, MDT

This morning Bill was all bright eyed and perky.
The dialysis took nearly 6 liters of water out of his body yesterday. What a difference that made.

His hearing seems to be improving as well. We are not using the white board nearly as much. He his understanding alot of what we say.


 Bill was out of bed and in his wheelchair for nearly 5 hours. We had lunch outside again today (we ate he napped) and sat in the waterfall garden for quite some time.
We played a game of UNO and watched some television. It was pretty relaxed Sunday.

We are hopeful that we will be headed home soon.

Monday, July 26, 2010 7:20 PM, MDT

Bill is still on the right track. Standing and transferring from bed to wheelchair is getting easier. He sat in the wheelchair all day today and didn't want to get back to bed this afternoon. That is good that he doesn't want to be in bed. He had PT two times today and Bill welcomed it.

Our friends Deb and Dave are here to help us and to get the girls home as I will be flying with Bill. It  looks like we will be home this week. We are so happy to be headed home.
To all our neighbors: My parents, Max and Carolyn, are going to be at our house tomorrow. They are driving a big truck and camper with a boat. They will be there for a few days taking care of some things for us. They are on their way to a family reunion and will return next Monday. 

Tuesday, July 27, 2010 7:25 PM, MDT

Well, today was kind of a slow day. Bill slept for most of the day. He had dialysis this afternoon, which went rather smoothly.

Last night a doctor came in and looked at Bill after being off for 5 days. He said that Bill looked 100% better and thought that he would be walking and almost back to normal sooner than we think.

We have been accepted into the Northern Colorado Rehab Center, but have yet to have a time of departure. It should be either tomorrow or Thursday.

Making arrangements to go home was a fairly involved process. Thankfully, there was a social worker, Rachel who took care of all the arrangements for me. I wouldn't have had the first idea of where to start. I didn't know what to feel about going home except that it was time. I am pretty sure that the hospital in Great Falls would have been ready to discharge Bill to a long term acute care facility wether I needed to go home or not.

Our dear friends, Dave and Deb drove up to Great Falls to help drive the truck and the girls home. The hospital was talking about sending Bill and me home earlier, I told them that I would not leave the girls here alone so.... Luckily it worked out ok and Dave and Deb got here before I had to go.

Bill kept asking to see his truck, we took him out to the parking lot and showed him the truck and camper. Before Bill got sick we had broken a window in the camper. When he saw the damage he told me how he could fix it. I was sure that his brain damage wasn't anything that couldn't come back over time.

Bill was also worried about how the girls were getting home. He kept saying that they should leave before we did, he was being a good dad trying to take care of his girls.

When the rehab doctor told us his opinion of Bill's recovery we were very optimistic of his complete recovery. I just knew that everything was going to be ok.

The girls were starting to get ready to go home. Kayla was trying to think about going to college. She bought some things for her dorm room and was trying to get her head around the fact that she was moving to Grand Junction soon. I had told her that she had to go to college as planned no matter what. That is what her dad and I wanted. Being that Bill was doing so well I thought that she could go to school with an easy mind.

I was a little concerned about the location of the rehab center we were going to. It was 25 miles from home just outside of Loveland, Colorado. I was relieved though that we didn't have to go to Denver.

Thursday, July 22, 2010 6:54 PM, MDT

Today was much better than yesterday. Bill's fever has started to go down and he felt a lot better today. We could also see that he was more bright-eyed and bushy-tailed. Haha.

OT was able to come in today and got Bill situated in his wheelchair. He sat in it for about 3 hours. We didn't go outside because of his fever, but it was still good for him to be out of bed. Even though we never realized it until now, every time we are talking to Bill and interacting with him, we are doing therapy. Therapy for his brain, hands, feet, arms, legs, voice. We asked Bill to draw a picture for us on the whiteboard. He drew a fairly accurate picture of our house. We took a picture of this house and have attached it.

Dr. Geyer, the infectious disease doctor, has taken Bill off the antibiotic that could have been giving him the tremors today. We can already tell that they are slowing down. To be exact, Bill hasn't had a tremor in 9 and a half minutes.

Jalyn has christened the yellow robes we have to wear "Oompa Loompa suits". Quite appropriate. We have also attached a picture of these in order for you all to get a better image in your minds.

Friday, July 23, 2010 7:21 PM, MDT

Today was a pretty good day. Bill slept most of the morning which is ok, because we don't think he sleeps enough anyway. We got him up in his wheelchair this afternoon and took him outside for about an hour. He really enjoys being outside.

He did a short workout on the arm bike and was actually able to hold himself up without any back support.

Bill had his ears cleaned out today, which seems to have helped his hearing somewhat. He still can't hear very well, and we have to write a lot of stuff down, but he can hear some of what we are saying. Now we have to be careful of what we are saying around him....

At any rate, he was acting much more normal this afternoon and tonight which makes us feel a lot better. Plus, it is more fun to be with him.

Saturday, July 24, 2010 6:09 PM, MDT

So basically, not much happened today. When we came into the PCU this morning, Bill was sleeping and on a mouth and nose oxygen mask. It kind of scared us until the Dialysis nurse told us that because his kidneys aren't working, the extra fluid has to build up somewhere. When we were in the CVU, it built up in Bill's arms and legs and caused them to swell. This time, it built up in Bill's lungs. This made him short of breath, so they put him on the mask.

Shortly after Dialysis began, he was breathing easier and now is breathing completely normally. He still is getting a little bit of oxygen, but the mask is not required.

Bill finally woke up at 6:00 this evening.

I know that I have mentioned it before, but everyday I woke with a sick stomach. I just never knew what I would find at the hospital. I usually slept ok but I would wake up early and feel like I really needed to get to the hospital. I tried to not show to the girls how I was really feeling and I tried to eat breakfast so that they would eat too.

When we were with Bill, which was pretty much the entire day, we were constantly working with him in some way, either moving his legs and massaging them or testing his memory and cognitive skills, what ever we could do to help his recovery.

We had to wear these yellow robes because the doctor felt that Bill was carrying a germ that could be spread throughout the hospital. We certainly wouldn't have wanted to get anyone sick so we didn't mind having to wear them. They were not very attractive however and they were hot.

When I came in and saw him with the oxygen mask on I was very scared. I asked him what was going on and he didn't know. When I asked the nurse she explained it to  me. Bill had had a hard time breathing all night so he was very tired that day. His breathing was much easier after dialysis and I could breath easier as well.

Monday, July 19, 2010 7:08 PM, MDT

It was a Physical Therapy day! There weren't any big changes, but we are amazed at how much stronger Bill is! He is so determined and is a hard worker. He'll do just about anything to get out of the bed and back on his feet.

We took him outside again, and he was really enjoying it. He did, however, complain that it was too cold. Ha. It was in the 70's.

Bill stood up with the help of a walker and the physical therapist. It was really really awesome! He stood up 3 or 4 times. It just blows our minds at how much Bill has improved.

He was also doing a couple crunches while laying in bed and was moving his legs up and down.

Tuesday, July 20, 2010 7:49 PM, MDT

Today was very much like yesterday except that Bill had dialysis. We took him outside for lunch, we ate, he napped. It was a lovely day for a picnic, in the 70's for the high.

Bill is stronger everyday and continues to amaze us and the staff with his progress.

Lollipop therapy is a favorite of the girls. He uses lollipops to help strenghten his mouth muscles. Every muscle in his body is weak, even the mouth. We are hoping that he passes the swallow test soon so he can start eating.


His sense of humor is certainly still intact. He has the nurses and CNA's  laughing. It is so good to see that.
Last night he even played a card game with the girls.

We love to read the messages you all send.

Wednesday, July 21, 2010 6:30 PM, MDT

Well.... today was kind of sucky. Bill has a fever today and doesn't feel well. The doctors put him on some anitbiotics and they should kick in to remedy that any time now.

Despite the fact that Bill felt crappy today, he still tried to do some physical therapy. It takes a lot to stop him from working out.

The audiologist came in today. He thinks that Bill will be able to hear again with hearing aids. However, further tests are needed to fully support this diagnosis.

That's pretty much all that happened today.

Bill did really want to get better so he could go home. He kept telling us that he wanted to go home. He didn't really remember being home however. I asked him when was the last time he had been home and he didn't remember. His memory had huge holes in it. He didn't remember how old the girls were. He didn't remember Kayla's graduation from high school or leaving on our trip. He did remember every person that we asked him about. He knew our phone number and the number for work. He had asked me to call work for him. I felt pretty sure that his memory would all come back when we got him home.

We took Bill outside when ever possible. He liked it and we sure liked getting out of the hospital every chance we got. The weather was fairly cool in Montana we didn't have too many days where it was above 90. Mostly it was in the 70's and 80's.

He did get along well with the staff. He had the nurses and CNA's wrapped around his finger. He liked to tease and give them all a hard time. One CNA brought her husband in to meet us and Bill told him that he was bringing his her home with him. The girls and I came to love the staff as well, and continue to keep in touch with some of them.

Bill was able to play card games with us and read parts of the paper and we even watched a movie together. It was nice to do "normal" things with him. I had lots of hope that Bill would recover completely.

Fevers were scary, as we knew that infection could be really bad. I really wanted Bill to get off the anti-biotics too. I felt like the anti-biotics were messing with him and possible causing the seizure like activity that we were seeing.

There was some hope on the hearing side too. The dr. that saw him thought that hearing aids would be helpful for him. It must have been very difficult for him to not be able to hear anything. I really wanted to be able to talk to my husband again. Writing everything down is not the best way to "talk". I missed having a conversation with him. It was also difficult to translate the things that the doctors were trying to tell him. I did try to tell him what they were saying.

The messages and e-mails were our life line to the "real" world. We loved getting them.

Friday, July 16, 2010 8:05 PM, MDT

So we go into the cardiac unit today, and Bill's room is empty. Apparently he was moved back into the PCU after we left him last night. So that's where we are to stay for a while.

Today was a pretty good day. OT came in this morning and had Bill brush his teeth, comb his hair, and wash his face. Then she had him sitting on the edge of the bed. He held himself up for about 10 minutes. He said it was hard, but he knows its good for him and wants to do more.

The trachea is probably coming out on Monday or Tuesday. Yay! The Drs are thinking about surgically removing the sores on his knees because they are really deep, and it would allow his knees to heal faster.

We were told today that Bill does not have diabetes, as they were worried about that. His blood sugar has been normal for a couple of days. This is really good news. 

Saturday, July 17, 2010 7:29 PM, MDT

A day of ups and downs,
First, dialysis went well, then we figured out the source of some pain, it wasn't a big thing and easily remedied. Then the doctor decided that the trachea could come out today. It was taken out this afternoon and he is doing fine.
 He also had a good PT today.
 He is making some urine and it seems to be increasing daily(keep praying for the kidneys to kick all the way in).
 The down side is that he had a seizure today and that is a little frightening and disconcerning. But the good news is that it is not a continuous one and it seems to have stopped now. Pray for that to not happen again.
Keep up the prayers as this thing is going to be a long recovery.

Sunday, July 18, 2010 6:33 PM, MDT

Today was a good day. It started out with a bath. He has begun to help the nurses when they move him around.

During PT Bill was sitting on the side of the bed and held himself up very well. It was just a few days ago that he could barely hold himself up at all. He also was able to stand up with the help of the PT. It all went very well.

We were finally able to take Bill outside! It is quite a process to get the man-power to transfer him to the wheelchair and unplug all the machines. We were outside for about an hour, and Bill was definitely enjoying the sunshine.

When we got him back into his comfortable air bed, he conked out and slept for a few hours.

Bill did not have another seizure today, although he was a little bit twitchy all day. We believe that those twitches are just his brain calming down from the seizure yesterday, but that is our unprofessional opinion.

Bill is definitely getting stronger every day, and is enjoying having some family around. He has been smiling a lot and we know that his sense of humor has not left him. Keep those prayers coming

It was scary walking into Bill's room and he wasn't there. I knew that if something bad had happened they would have called us, but still it was something of a shock.
Everyday was something new to worry about or to think about. At first I just wanted him to survive, then it was getting off the ventilator and so on. Knowing that he didn't have diabetes was good news. He still had so many things that could go wrong.

It was hard to watch this grown man be so dependent on other people for everything. He could not even roll over on his own. One of the first things he asked for was clothes. I had to go to Goodwill and get him some sweat pants and clothes that were hospital friendly because all he had was camping clothes.

Watching him have another seizure was frightening. At the time the neurologist gave him more anti-seizure drugs. He continued to have seizure like activity, but they weren't seizures. We now believe that the anti-biotics caused both seizures and the twitches.

Taking the trachea out was a very big deal, but the process of removing it was surprisingly simple. The respiratory therapist just pulled it out and handed it to me.

Bill enjoyed his trips outside. I am so thankful that the doctors and staff allowed us to do that. I believe that sitting in the sun is very healing. It was quite a process to take him outside. First we had to get permission then we had to get help to put him in a wheelchair. We had to make sure he was "unplugged" from everything and had a portable oxygen. I feel that it was worth the trouble.

Bill did enjoy visitors and I think that he liked seeing his family.

Tuesday, July 13, 2010 5:49 PM, MDT

It was a busy day for Bill today. He started off with fixing his stomach tube. He is back on his liquid nutrition. He was very lightly sedated, so was very sleepy for most of the day, which is OK because he had dialysis for 4 hours. You can't really do anything during that. There is a glimmer of hope after the preliminary hearing test.

Bill is doing very well with the PMV (which allows him to talk). They were ready to do a swallow test but because of dialysis, that will happen tomorrow.

He was fitted for a wheelchair today. That will come in tomorrow morning. This wheelchair will be suited for his needs and will be comfortable for him. However, Bill will not want to use it for very long. He wants to walk! And he will, once he gets into rehab with intensive physical therapy.

We discovered today that he is allergic to Heparin, a blood thinner. Bill can't ever have it again for the rest of his life.

Wednesday, July 14, 2010 4:53 PM, MDT

We now know what the Cardiovascular Unit looks like. Later last night, Bill's heart went into A-Fib, which basically means that his heart was off rhythm. So the decision was made to move him into the CVU because they can monitor it better and administer the medication he needed. We were very concerned until we talked to Dr. Sonna who put our minds at ease. He told us that this was not a big deal and not to worry. After visiting with Bill for a while and went to sleep with no major worries. Today, his heart is back in normal rhythm.

We like the CVU rooms better. Unfortunately, we will be moving back to the PCU soon, probably tomorrow.

Today, he had therapy. The PT had him standing up with lots of help and only for a very short time. It is still good news.

He passed his first swallowing test! They dyed a few ice cubes blue and checked to see if any of the blue dye went to his airway. Happily, it didn't! They will test him again tomorrow. They should slowly start introducing food in a few days.

Apparently, there are no audiologists at the hospital, so Dr. Garwin is doing his best to get someone over here to work with Bill and his ears. We hope to have some answers soon.

Right now, Bill doesn't have any IVs in him, however he will have to have medicines administered via IV. This is quite good.

Thursday, July 15, 2010 7:53 PM, MDT

Bill is probably going to stay in the CVU because of bed availability. We are happy because we like the room better. Dialysis was early this morning and went well. After dialysis PT came and worked him out and we put him in a wheelchair. He was in it for over 2 hours. The OT came and Bill brushed his teeth and combed his mustache. He saw himself for the first time, he said he looked pathetic. We said that we thought he looked great. We also wheeled him out to the waiting room so he could have a change of scenery. We sat out there for about 30min.
The trachea he has was also changed to a smaller one, that is one more step to getting the trachea removed.
We had some really promising news about the kidneys, there is some urine production. We are very excited about this news. We will know more tomorrow.
 When we told him that we were going to get lunch. We were teasing him about his food, he is on a liquid diet directly into his stomach. He laughed about what he has to consume.
It might get up to 90 tomorrow. Then it will cool off to the 80's again.

Bill had trouble with vomiting and keeping the tube feeding down. The doctors had to adjust the tube numerous times. It was one of the frustrating things that we had to deal with.

Found out that his allergy to heparin would cause his blood to clot and he could die if it was given to him again. That was not good news, with dialysis heparin is used frequently. It makes the process much easier, usually heparin thins the blood. One time a nurse was flushing his iv line and I thought that I heard her say she was going to use heparin. I didn't think that could happen. I questioned her and sure enough she did use the heparin. Luckily she was able to pull it back and it was such a small amount no harm was done.

The night that Bill's heart went into a-fib was a scary one. When the heart gets out of rhythm it can cause a heart attack. When Bill's heart went out of rhythm the staff on the PCU unit could not get it back into rhythm so they wanted to take him across the hall to the cardiac unit. They told us to go wait in the waiting room. We waited and waited and waited for someone to come and get us. I was thinking that something must have gone wrong.

 I was scared to go looking for him in the cardiac unit because I didn't know what they would tell me. Finally, after about hour and half Kayla and I got up the nerve to go find him. The three of us walked into the CVU and saw the doctor that had been Bill's doctor in the ICU. He was surprised to see us and asked what was going on. When we told him he quickly put our minds at ease and reassured us that everything would be ok. We went into Bill's new room and said good night to him and went "home" to bed.

I was very upset by all this and had a hard time calming my self.

His heart was back in rhythm by morning. The doctor was frustrated at the lack of help for Bill's hearing loss so he got busy trying to get us some help.

The doctors were so good to us in Montana. When we told the doctor that we liked the room in the CVU better, he said he wouldn't change the order for a few days. 

It is amazing how we would get excited over things like a smaller trachea. Your world changes dramatically when something like this happens. My world was pretty small, it consisted of the hospital and my two girls. My social life was nurses and doctors.

Bill's mother and brother came to visit as well as his aunt and uncle and cousin.They were greeted with mixed emotions as I felt like I had to entertain them. All I really wanted to do was take care of my family.

 Bill had other visitors as well. A friend from work stopped in on his motorcycle trip to Montana. A hockey friend who was on his way to Canada, stopped by. My good friends the Zynda's stopped in on their way home from a vacation. Also Harriet's son stopped to say hello while visiting his mother. It was good to see some familiar faces. I appreciated the trouble that these people went through to show us they cared.