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.

Saturday, July 10, 2010 7:14 PM, MDT

The day began with dialysis, which took up the larger part of the morning. Then, after a nap, the physical therapist put him in a wheelchair and took him out into one of the waiting rooms that has lots of windows and a nice view of the Great Falls skyline. It was a nice change of scenery for Bill.

He now has the use of a whiteboard, and is able to write some things down, since he knows he doesn't have the ability of speech yet.

It was a slightly uneventful day for us, but an exciting one for Bill. 

Sunday, July 11, 2010 8:49 PM, MDT

Today was a good day! We were met with smiles! We finally found out that Bill wasn't hearing us talk to him so we have been using a white board to talk to him and he can write back too. This has made things so much easier for him because he understands what is going on. We were able to tell him the story of his getting to the hospital. He didn't believe me that he rode in an ambulance. We don't quite understand why he can't hear because I know he could hear in the ICU. They will be looking into it.
We were able to put him in a wheelchair and take him outside for few minutes. I think that was good. He asked me where the truck was. He probably has been worrying about that for days.
Bill gave us a thumbs down when we had to tell him that the PT was only going to be able to see him once today. We knew that he would be motivated once he knew what he needed to do.

Monday, July 12, 2010 7:30 PM, MDT

Today was.... interesting, but in a good way. The PT was in early this morning and had Bill standing up, with lots of support, of course. The PT was very pleased.

Around lunch time, Bill was taken to the operating room to have his dialysis catheter replaced. That went quite well.

Not long after, one of the respiratory therapists put the Passy-Muir Valve on. That allows Bill to talk. His voice is distorted partially because of the valve, and also because Bill can't hear. It is easier to communicate with him because of this valve.

Ever since the PT had Bill standing up this morning, he has been wanting to do it again. Instead, we put him in a recliner. He likes sitting in the recliner. It makes him feel a little less sick.

We always seem to be busy. There is rarely a time when we are at the hospital when we are just sitting. Most of the time, we are talking to Bill, talking to doctors, waiting for doctors to come so we can talk to them, or talking to nurses. It is very exhausting.

I am thinking that when Bill first came out of the ICU he thought that he must be dieing. I can't imagine how scary that must have been for him. Waking up in a hospital with everyone in blue suits, he couldn't hear, couldn't move his legs, breathing was very different. When we realized that he couldn't hear and wrote everything down for him he then knew that he wasn't going to die right then.

We came into Bill's room one afternoon and he had managed to somehow get himself half way off the bed. In his mind he could just get out of bed by himself. He did realize that he couldn't do it alone and didn't try it again. Just an example of his will to survive this awful disease.

Once I told the hospital staff that I needed to go home, they started the process of doing that. Thank goodness for the people who do that job. I wouldn't have had the first idea of what to do. It takes some time to arrange all the details.

Our days pretty much consisted of getting to the hospital around 9am and helping to take care of Bill as much as we could. We would try to get some lunch either at the hospital or go back to the apartment,and have a little break, then it was back to the hospital. We would have dinner at some point and back to say our good nights. We usually would try to leave around 9pm, if we could. Sometimes Bill would be very awake and it was hard to leave him.

There were beautiful sunsets every night as we went back to our apartment. The area around Great Falls is quite beautiful. It was hard to enjoy it too much however...