Wednesday, July 7, 2010 7:30 PM, MDT

BIG PHYSICAL THERAPY DAY!!  Bill shook the doctor's hand this morning and has been giving thumbs up to people. He is starting to be aware of what is going on. He was confused as to why he wasn't breathing through his mouth, until Joy explained to him that he has a tube in his throat and had him touch it. That calmed him down a bit.

The morning physical therapy session included waking up, sitting up, holding up his head, stretching legs, which is painful to him, and holding up his arms.

After a long nap, we had an afternoon PT session. That included putting him on a tilt board and standing him up on his legs as he was strapped in. His blood pressure and breathing was steady the whole time. He had some arm movement and very slight leg movement during that. The therapist was pleased with Bill's performance. And that pretty much wiped him out for the day.

We moved into our new housing and had an oven-cooked meal. We are hoping that we'll be comfortable there.

Thursday, July 8, 2010 7:28 PM, MDT

All we can say is that dialysis sucks! The dialysis machine was having some difficulties. It took an extra long time to get the job done. Dialysis really wears him out and he was pretty sleepy this afternoon.

Occupational therapy did get a chance to work with him and he now has a nice pink sponge to squeeze with his hands. Bill has been using it frequently throughout the day.

He mouthed to the nurses that he wanted to go home. Maybe tomorrow he will get to try talking with an addition to his trache.
The ventilator machine is gone from his room!

The stomach feeding has begun again and that will help give him some more energy.

All the sores that were covering his body are almost all healed. We are hoping that the sores on the inside are healing at the same rate.

We are all moved into our little apartment and are finding it more comfortable than the hotel.

Friday, July 9, 2010 6:28 PM, MDT

We got moved out of ICU to PCU (progressive care unit)! The PCU has 1 nurse per 4 patients, a larger room, and it means that Bill no longer needs the ventilator. He still has the trache in and tube feedings. He gets tired extremely easily. Just moving him over a unit mixed with 2 PT sessions wiped him out. The speech therapists gave him a white board to try and write on, which he hasn't been able to use because he's been asleep.
 The room is more comfortable for us, as it is bigger and actually has real chairs to sit in. We are also more free to sit in here with him and are able to come and go as we please. We don't have to call in to visit anymore which is nice.
 It finally got hot here (88 degrees), but its supposed to cool down again next week.

Every morning I woke with a sick stomach. It was so hard to eat breakfast. Usually, once I got to the hospital and seen Bill  my sick stomach would go away. I was nervous all the time we just didn't know what would happen that day. I almost always went to bed feeling ok, but sometimes I was trying to reasure my girls that everything would be Ok, even if I wasn't so sure myself. I learned the power of positive thinking. 


The journal that we kept and the e-mails that we sent really helped us. We looked forward to every comment or words of encouragement that we recieved.

Bill had trouble digesting the liquid food that he was recieving, so the doctors put the feeding tube directly into his intestines. He tolerated that fine.

Bill had some awful looking sores all over his body. They were dark purple and black. They were caused by the infection. Some were as small as a pencil eraser and some were very large. Both knees were completely covered by a black leathery sore. Also his entire skin was peeling off in big flakes. We were ok with having to wear the gloves because he was a little yucky to touch.

The girls and I were very excited to leave the ICU because we knew that it ment that Bill was getting better. Bill didn't seem to understand that he was moving to a unit that ment he would get better. We were concerned. The next day he wrote on the white board to bury him in Hamel(his home town). I thought that he was giving up and I was very upset.

It was nice to beable to come and go as we pleased and didn't have to check in with anyone when we wanted to be with Bill. Since the room was more comfortable we mostly would stay with him all day. We went to eat and get out for a few hours but most of our day was doing whatever we could for Bill. It was 12 hours or more of hospital. Very rarely were we sitting, we cared for Bill in whatever way we could.

It was almost exactly three weeks that we spent in the ICU.

Sunday, July 4, 2010 5:02 PM, MDT

Big news! They are weaning Bill off the ventilator,  Bill was breathing without the ventilator since 10am this morning. This is a big step!! He will go back on as he needs. So far he was breathing on his own for 6 hours.  As he gets tired he can get help from the ventilator. We don't want to wear him out. Considering he was in complete respiratory failure two weeks ago, this is pretty big.

Also Bill is being given the full amount of food prescribed so he can have energy to get stronger. Even his digestive system was not functioning, so he was not getting the calories that he needed to get stronger.

Apparently, Montana has very lax fireworks laws, since we had quite a show out our window last night. If we are outside watching tonight we may need a winter coat. It is pretty cool this evening. It is possible that we might find the perfect viewing spot from the hospital. We know people.

Monday, July 5, 2010 6:34 PM, MDT

Bill had dialysis this morning. Then, this afternoon, Bill woke up, smiled, waved, gave us a thumbs-up, and squeezed our hands. Bill is still really tired, and doesn't stay awake for very long, but his awareness is much more than it has been. He grimaces when someone moves his legs, which shows that he is feeling pain. He also has a stiff neck. The sores that are covering his body are beginning to heal. Some are just disappearing, while others scab over.

Bill has also been off the ventilator since 7:00 this morning, and we are anticipating that he will be off it all night. Bill is coughing productively, which is good because it shows he has some strength.

It has been a really cool, rainy day. We got caught in a hail storm walking back to the hotel this afternoon. The girls spent most of the afternoon exploring the hospital. There is no third floor on the south side of the hospital. Very strange.

The fireworks last night were impressive. They were being shot off all around town. The walk back to the hotel was kind of scary because it sounded like we were being bombed or shot at.

\ 

Tuesday, July 6, 2010 5:58 PM, MDT

Bill has officially been breathing on his own for 36 hours!

Bill's stomach wasn't digesting his food very well, so he went through a small procedure to move the feeding tube farther down in his stomach. The doctors also looked down his esophagus and into his lungs, and all the feedback from that was positive.

Earlier this afternoon, Bill woke up from the little sedation he'd been on and was moving his head slowly from side to side a few times. He was also smiling at the girls.

We all are moving to The Gift of Life free housing tomorrow. It is bigger than the hotel room we are in and will be more comfortable

Getting off the ventilator was such a good thing, the doctors said that because Bill was in such good shape and that he played hockey at altitude his lungs were very strong. His heart was very strong as well.

Our 4th of July was pretty impressive. The night nurse found us a good spot for us to watch the fireworks from the hospital. The hospital is beautiful. There are many areas to sit and relax there with large windows overlooking Great Falls. We had a view of pretty much the entire city. Fireworks were being shot off over the whole horizon. We couldn't tell the professional displays from the general public. Walking back to the hotel was an experience as well. There was fireworks going off all around us and over head.

The weather in Great Falls was mostly cool we only had a few days of hot weather. I have to say that I didn't miss the very hot weather that was going on in Colorado.

Being so far from home was difficult, I had to find someone to take care of my cat, she ended up staying with a friend who has many pets. At least I didn't have to worry about her being left alone. My friend, Faith, was taking care of my mail. She took care of everything for me. Paid my bills, and sorted the mail, returned phone calls, and checked on my house regularly. She also was a contact person for people who wanted to donate money to our family. If it wasn't for her I don't know what I would have done.

My neighbors took over the lawn care and care of our garden. It was a comfort knowing that all those things were being taken care of. There was also many people who donated money to our family. Bill's coworkers were more than generous and I am so thankful for that. We also received many care packages from people, getting those reminded us that we were not alone.

There was somethings that made it better to be so far from home. I didn't have a house to clean or the media at my door. I only had to concentrate on my family and helping to get my husband home.

The hospital is a regional hospital therefore there are many people getting treatment there from far away. The hospital foundation has housing available for free to families with a loved one in the hospital. We were fortunate to get a small apartment. It was private and and we could prepare food as well access to laundry and we had separate beds. It wasn't in walking distance really so we had to change our routine up a bit. The apartment was about 3 miles from the hospital.

Friday, July 2, 2010 5:05 PM, MDT

Today was a bit of a waiting game, with all the sedatives he had yesterday Bill was pretty sleepy today. This afternoon I think he was hearing me talk, I could see his eyes moving under the eyelids. He is breathing well on the trachea and they will start to ween him off of the ventilator as he wakes up.
 He will have dialysis tomorrow.
 His sores on his skin are starting to heal. We think that the sores on his skin are also all over his insides as well, the hope is that those are healing too.

The weather here was cool and cloudy today, only in the 60's the weekend forecast is for 70's and sunshine.

Friday, July 2, 2010 9:11 PM, MDT

We just got back from saying good night to Bill and we did get his eyes to open for a second. He did that a couple of times.  He should be even more awake tomorrow and we can get back to work.

Saturday, July 3, 2010 7:30 PM, MDT

Bill stayed 'awake' for an hour today. He is tolerating more food in his stomach and is off the penicillin for the meningitis, but still has 2 more antibiotics in him. That will all be done on Tuesday. Bill also moved his arms of his own accord.

Our new friend, Harriet Biedscheid, took us out to lunch to an ancient Perkins and took us on a beautiful drive along the highway to Helena.

I had decided that I needed to go home by the end of July. My kids were going to start school in mid august. When I mentioned to the doctors that I wanted to take Bill home by the end of July they kind of laughed at me and said that might be doable. I had decided that I was bringing him home whatever that would take.

We still had plenty of support from the friends that I had made while in the waiting room of the ICU. We supported each other and was cheering each other on. We were so happy when one of our friends were healthy enough to move out of ICU, it was also hard to watch them go while we were still there. The girls continued to see the girl who had surgery even when she was moved to another floor. It was a nice distraction for them to talk with another teenage girl about teenage girl things. Her family was also a huge comfort to me.

Harriet was so good to us. She is an amazing woman who has not had an easy life herself. Her visits were always welcome. She is an inspiration to me.

Wednesday, June 30, 2010 5:59 PM, MDT

Yesterday Bill had some seizure activity and they gave him a sedative and antiseizure meds. They seemed to do the job. His ct scan came back with no changes.(that was good news)
 The Dr says that this type of thing is not uncommon.
They are going to put a feeding tube in his stomach tomorrow and maybe a tracheotomy. We want the tubes out of his mouth. There is such high risk for infection the longer they are in his mouth, plus he will be much more comfortable.

He is still getting dyalisis often.
His lungs are clear and he is breathing on his own, the trache is only so they have access to suction if necessary.
He is making his own blood, bone marrow seems to be working.
His heart is in good shape as well.

Wednesday, June 30, 2010 9:58 PM, MDT

Bill will be having a tracheotomy and a feeding tube put in tomorrow. The trache will help him be more comfortable and make it easier to breath. It has been known to get patients off the ventilator more quickly. I think he will get stronger more quickly as well. We need prayers for all the procedures he is having done tomorrow, the risk factors are minimal.
The night nurse that helped Bill the first night is back and he brought the girls a couple of gift bags with lotions and stuff in them, I tell ya the people of Benefis Hospital have gone above and beyond for us.

Thursday, July 1, 2010 7:25 PM, MDT

What a day! first dialysis then a feeding tube put in by a Dr. that was born in Fort Collins, his dad went to Colorado A&M University. That went very well. Later, he had his tracheotomy and that went as planned as well. They did have to shave his beard. I managed to save the mustache. He does look different without all the tubes coming out of his mouth and of course, no beard. He did get some blood today, everything else is the same. We are planning on bugging him tomorrow and get him awake and back on track to getting him home.

The girls and I walked to Target and Sonic. There's a lot of stuff close by that we can walk to, so we are going to be in good shape by the time this is all over

The nurse was getting Bill ready to have the trachea put in, as I was talking to her she said something about shaving him. I said oh don't shave the mustache, if I had not said anything or had not been there they would have shaved his mustache that he had had since he was 18 years old. It was hard enough for us to see him without the beard it would have been very hard to see him without the mustache.

I was ok with the trachea because I knew that the tubes in his mouth were not good. Bill wasn't awake enough to just remove the breathing tubes. The trachea allows the respiratory staff to be able to suction out any mucus that Bill wouldn't be able to cough up. The respiratory staff quickly became some of our favorite people. They are so important in saving peoples lives. There was one time when Bill was having a hard time and the therapist was able to get a huge chunk of old gunk out of his lungs. With the blessing of one of the respiratory therapist we lovingly called them "snot suckers".

Bill kept getting better everyday and I was feeling pretty confident that he was going to be ok and recover. My knowledge of hospitals and ICU was mostly from movies and tv. Well I soon learned that those programs are not very acurate in depicting real life.

I had to try and be lots of things at once. First I had to be strong for Bill. I also had to be a mom to two very scared teenage girls. I also was the main person comunitcating to family and friends. Some people didn't realy understand some of the things that I was telling them. Then I had to explain it. At times I just didn't have the energy to do that.

I did have some support, Bill's brother was there for 10 days at the beginning and his sister was there two for part of the time. Some friends from Fort Collins came up for a day and brought me some cash, that was donated from Bill's coworkers. But I was still the one that had to do everything. I was scared and worried all the time. I was exhuasted every night and had a hard time eating, but I was positive that he would be ok

Sunday, June 27, 2010 10:50 AM, MDT

This morning, Bill was opening his eyes nearly all the way. He was squeezing our hands, looking at us, and was fully aware of our presence. He stayed 'awake' for about two hours. Joy was reading a magazine to him, and it was clear that he was understanding what she said. All is well for now.

Monday, June 28, 2010 10:55 AM, MDT

Bill's is able to open his eyes all the way and stay awake for a while. This morning when the dr came in and was talking to the nurse Bill moved his head towards the dr and looked at him and seemed to be listening. Bill is still on a ventilator and in ICU. But his "numbers" are getting better everyday. All good signs. He has been pronounce no longer contagious so we don't have to wear any more plastic clothes. I can't tell you how uncomfortable they were. It is going to be a long process of healing so all keep all the prayers coming.

We are  finding Great Falls to be a very nice town. Lots of parks the Missouri river flows right through town. The people have been so so nice to us as well.

Tuesday, June 29, 2010 9:13 PM, MDT

Well we had a good morning, physical therapy was good he was making progress. Then this afternoon we had a little road bump. and they gave him something to relax him. He has tested positive for another bacteria. Doctors are being very proactive and are treating that before it turns into something else. We are back into the plastic outfits for a few days.

We are really liking the nurses that Bill has.It is too bad they have to take a day off now and then

These were long days of waiting. We would see Bill every few hours. We tried to fill the time between by exploring the town somewhat. Great Falls is very small and there isn't much to do there. It is a pretty town however. The hospital is within walking distance to lots of stores and restaurants, we did lots of walking.

The road bump that Bill had was a seizure. I was there when it happened and it was scary because I did not know what was going on. They started him on anti-seizure drugs which I was concerned about but had to trust the doctors. The whole time I had to trust what the doctors were telling me, looking back I realized that I probably didn't ask enough questions. I guess when you are in a situation like that, you have to trust that the doctors know what they are doing and that it is the right thing.

At one point early on in Bill's illness his heart went into 

a-fib. The doctor wanted to shock it back into rhythm. I had to give permission for that. It had risks, I looked at the doctor and said, you are dealing with an aggressive bug, be aggressive back. He smiled and said that he liked my style. I felt then that the doctors and I were together on this.

Because Bill was on so many and such high doses of anti-biotics his whole system of bacteria was wiped out. What moved back in was the bacteria from the hospital which has the potential to make people sick. There was risk of spreading the bacteria to other parts of the hospital so we had to "gown up" again.

Friday, June 25, 2010 10:10 AM, MDT

Saw Bill this morning,  he was sleepy, the nurse had given him a dose of sedative and so he wasn't opening his eyes. They are not suppose to give him anymore the Dr's want him to wake up.

His lung x-rays came back better than yesterday, he is breathing on his own, but they won't take the tubes out until he wakes up. All his other vitals were steady. The kidneys are not working yet they are working on it. White blood count is still out of control.

They are giving him some food in his stomach and his stomach was making noises so maybe that will get some things going.

Keep up the prayers I think they are working, but have a long way to go.

Friday, June 25, 2010 10:43 PM, MDT

Another day of progress, his lung x-rays were pristine. He has been getting food in his belly, the nurses say that is a very healing thing for a body. We just need to get him to wake up, he is still so sleepy. He is getting physical therapy daily, they had him sitting on the side of the bed, apparently he tried to hold himself up. Go Bill!

Saturday, June 26, 2010 2:22 PM, MDT

Bill was a little more alert this morning when I went in. He started moving his eyes right away. They had him sitting up and had just gotten a bath. The nurse said he had his eyes open and was not happy about the bath. Ha, The girls visited a little later and got an update on his kidneys. They are taking him off the constant dialysis machine and switching to a more conventional one. They also gave him a shot to kick start the kidneys. Blood pressure meds are almost all off. He is making improvement every day. Keep it up Bill

Thank you to all the people who have  posted messages we read them all, it really helps boost our spirits.

We had to ask permission to enter Bill's room every time we wanted to visit, also we had to where plastic robes and gloves and masks. It was very uncomfortable for us.

 We had a bit of a routine going by now. I would wake up early and go see Bill. The girls would sleep in and join me later. Then we would go in and out every couple of hours. Every evening we would return to say our good nights and get back to the hotel by 9:30 pm.

 We got to know the nursing staff fairly well. The nurses were amazing. Not only did they take great care of Bill they wanted to care for us as well. One night nurse, Paul, brought the girls gift bags full of lotions and such. One nurse was going on her days off and gave us her home phone number. Another cried when she was going off shift for a few days.

Bill's white blood count was so high that they did a process that actually cleaned the white blood cells from the blood. It seems that his body didn't realize that he didn't need all the white cells.

It was around this time that we met Harriet. She was waiting by the ICU door one afternoon. I walked by and she saw my CSU shirt and she said I am looking for you. I was surprised that this elderly lady would be looking for me. It turns out that her son played hockey with Bill and when he heard that we were in Great Falls he called his mother and asked her to go to the hospital and offer up any help she could give us.

Harriet became one of our angels. She cooked  us dinner one night and visited us and took us out to eat often. She even offered to let us stay in her home. We looked forward to her visits with us.

It was a very stressful time because everyday we did not know what to expect. It was very hard for me to eat or sleep. The girls and I were sharing a hotel room so we weren't the most comfortable. We were trying prepare some of our food out of the camper, to save money and it was a little easier to eat.

Thursday, June 24, 2010 9:45 AM, MDT

It was a boring night. Not much happened! The nurse said that Bill opened his eyes just a little bit for a second last night. Around 9:30 this morning, they took him in for a CT scan. The results for that will take a few hours.

Thursday, June 24, 2010 11:56 AM, MDT

Ct scan came back with no bleeding, his lungs are stronger as well. Yea!!!!

Thursday, June 24, 2010 9:15 PM, MDT

Bill had a CT scan this morning and there was no bleeding in his brain. He's on a breathing machine that lets him breathe on his own, but helps if he needs it. He started to open his eyes and tonight we got both of them open halfway for a second. He seemed much more aware of us talking and touching him. We bought some fresh mint and rosemary to have him smell. He reacted to both. When we had the nurse flip the light on, he squinted and kinda grimaced and did not appreciate it. We are feeling hopeful, but he still has a long ways to go and we still need your love and prayers.

I did call family to come and be with us. My brother in law, Tom, and sister in law, Kathleen, came as well as my best friends, Jon and Faith. I really needed someone to help me take care of my two teenage daughters. Jon and Faith stayed just two days but Tom stayed for 10 days. Kathleen stayed for a few days and came back for a few more after Tom left. I am so glad that I called them to help me. I didn't realize how much I needed them until they came.

By the time of the journal writings the experimental drug seemed to have worked, and we were seeing small improvements daily. I was always confident that Bill would recover completely.

There was a hotel right next to the hospital and we were able to walk back and forth. The dingy waiting area was just too depressing for us to sit in so we avoided it as much as possible.


The support of the hospital staff in Montana was exceptional. From the president of the hospital to the cleaning people everyone wanted to help us. It seemed that everyone knew who we were and wanted to lend us support or prayers.

We did meet some other families that had someone in the ICU. Brad lent us his laptop until I was able to purchase one. He also had his church praying for us. I mentioned the Hutterite people, Elizabeth and Sarah. They brought us food and prayed for us as well. I met Steve whose daughter had surgery for a birth defect and he has become such a support to me by his kind words and encouragement.
These people quickly became my friends.

Wednesday, June 23, 2010 10:24 AM, MDT

So they took the packing out of Bill's nose last night. They have him propped up to a sitting position. He's off almost all of his blood pressure medicine. We still need all of your prayers and good energy vibes!

Wednesday, June 23, 2010 3:38 PM, MDT

Bill is off of all his sedation medicine, and we are trying to get him to wake up! Any ideas?

They did have to put him back on one blood pressure medicine but that is OK. It is expected to have to put him back on some of those types of things since it hasn't been a week yet.

We are just about to go see him and see if we can get him to wake up! We'll keep you guys posted! Thank you everyone for all your support.

Wednesday, June 23, 2010 10:00 PM, MDT

Just came back from pestering Bill, We are trying to wake him up. Joy did get   some eye action, the eyes opened just a tiny bit. His numbers still look good. He had kind of a boring day, he stayed the same. But that's OK, its better to have a day that's the same than a day that goes backwards. OK, good night and we will give you an update in the morning.

We started a journal of Bill's progress a few days after he was admitted to the hospital.

Bill came into the ICU on Thursday night around midnight and by 1 am he was in complete organ failure. I was in shock. The girls and I were sitting in a dingy fluorescent lit room waiting to hear if their dad was dead or alive.

There was two oddly dressed women sitting in the waiting area and took it upon themselves to offer comfort to us, by giving us blankets and pillows and hugs and prayers. We later learned that they were Hutterite people. 

Friday morning the doctors were telling me to get some family here to be with us. Around mid morning the doctor came to me and told me that I had to make a decision. They wanted to try an experimental drug that could kill him or save him but that without the drug he was sure to die. I said to give it to him. We would know in 92 hours if it was going to work.

Bill was diagnosed with Meningococcal Meningitis on Thursday, June, 18th. We were in Glacier National Park on vacation. We took him to a small hospital in Cut Bank, Montana, where he was transferred by ambulance to Benefis Hospital in Great Falls.

If you would like to help us, please donate blood. Bill has used a lot so far in his treatment, and hospitals are always in need of blood. Please GO DONATE!

Bill started showing symptoms in the middle of the night Wednesday. He woke up and vomited a couple of times. The next morning it seemed he had the flu.

We were camping in Glacier National Park in a 8 foot pickup camper. It was cold and rainy that morning so I decided to get a hotel room so we would all be more comfortable. Bill continued to get worse, he did ask me to take him to a doctor, so I went to the lobby of the hotel and asked about medical care. The closest facility was 2 hours away in Cut Bank. I asked Bill if he wanted to go  and he said yes, by this time he was slightly delirious from fever. He decided to take a quick shower before we left. That is when I saw the horrible purple rash all over his body and was scared.

We were able to get him into the pickup truck and I had to drive 2 hours over mountain roads and bad weather to Cut Bank. When I pulled up to the ER I wasn't sure that this very small place could help us but since we were there I decided to go ahead and go in.

It was there that my 19 year old daughter, Kayla, was texting her friend that we found out about the outbreak of meningitis in Fort Collins, our home town. The PA in Cut Bank was on the phone to Poudre Valley Hospital immediately and quickly had Bill on antibiotics and was arranging to transport him  to Great Falls.

I was told not to follow the ambulance because he would be going very fast. I wasn't able to go too fast because of the weather. It was rainy and windy, I was only able to drive about 60 miles an hour down the freeway, in the dark and not knowing where I was going or what I was going to find when I got there.

We got to the ER around 11pm I went in and saw Bill for a few minutes and told him that I loved him and told me that he loved me too.

The girls and I were put on some very powerful antibiotics that made us sick to our stomachs.


I was so naive about this disease. I was so confident that he would be fine in a few weeks. I was in for a hard lesson about Meningitis.