My Dad

This is the story of My dad's death. It is sad. If you don't want to read it- please don't. It is just a record of my month and the time spent with the most amazing man. 

My dad on his seventieth birthday last November

My dad's name is Stephen. He has struggled with his health his whole life. When he was a baby he was covered with a rash and exzema. He spent a week at primary Children's Hospital when he was 18 months old and they sent home a list of 20 or so things that he was allergic to. These were very common foods like milk that he could not eat. It helped with the rash and with him feeling better- but because he did not drink milk, his bones were not strong and he broke a lot of bones as a child. He had asthma also- but he did not let that stop him from doing the things he wanted to do. He had bad feet my whole memory and they just kept getting worse. He was diagnosed with some weird thing called CMT 2. Which is something about ligaments being stretched out. (obviously I don't know much about it). He could hardly walk the last few years. His arthritis was really bad and he lived on ibuprofen until his doctors said that it was really bad for his stomach. So he had to live with the pain. His hearing was bad my whole life. Hearing aids did help, but he still had a hard time with following conversations when it was noisy around us. In 2007, he had an aortic dissection. Which meant that the lining of his aorta split forcing blood down in between the layers of his artery. If the doctors had not seen this when they did, the aorta would have burst and he would have died. He nearly did anyway! He had a splint inside his aorta from his heart clear down both of his legs. This is kind of like a metallic tube lining inside the artery.

 My dad watching a BYU football game last December

When he was in his twenties he was diagnosed with Colitis- a condition where your colon does not function correctly and slowly disintegrates. My mother was told as she was pregnant with my older brother to prepare herself because he would have to have his colon out in a year and then might not live much longer. He dealt with colitis for 45 years before he had to have his colon removed. After it was removed, his quality of life was not great because he could not absorb the nutrients that he needed, and other challenges that come from digestion issues. Lately, his "gut" as he liked to call it, was giving him a lot of trouble. In a normal gut, there are all kinds of bacteria naturally. There are good ones and bad ones and hopefully there are more good ones than bad. He was having trouble because a specific bad bacteria had taken over and caused what they call pouchitis. They tried and tried to control this bacteria but were unsuccessful. It is resistant to antibiotics. They decided to try a new-ish procedure that would get rid of this bacteria once and for all.

My dad helping with Jaxon's Eagle scout project in April.

So that is the background of this story. My dad was not a healthy person for a long time. It was hard to decide to do this procedure because it is so hard for him to fast. He has so little reserve on his body because he can not gain weight, only lose weight (but this procedure was supposed to help with this.)
So he decided this was his best (and only) chance of getting better and we were all fasting and praying that it would help him. On Sunday May 1st he started his fast and at the same time he started having pain in his stomach area. I tell you all this back ground so that you see that he was not able to recover from being so sick.

 On Alex's birthday in April face-timing with my brother's family

On Monday- the day of his procedure, his pain was really serious and he was struggling to stand or walk. As we started walking into the hospital, I wanted to get him a wheelchair. He said, I am able to walk. I will walk as long as I am able. I will not give up." He told the doctors that out of a scale from one to ten- his pain was a ten. It had been for 14 hours at that point. They thought it had something to do with the fasting or the medicine that prepares you for the procedure so they thought he would feel better as soon as the procedure was done and he could eat again. This was not the case.

The next day was Tuesday. He had been dealing with this excruciating pain for 48 hours. It was affecting his mind and he could hardly think straight.  My mom and I took him to the emergency room near our house. They gave him some morphine which did not really help with the pain and they did a lot of scans to see if they could tell what the problem was. They could not tell. They decided that maybe it was the fact that the bad bacteria had gotten so strong when he was fasting (and not on any antibiotics) that it just needed time for the procedure to work and the bad bacteria to be completely destroyed.  (Looking back, this is the most lame day. Why didn't they find the gall bladder problem? It was certainly inflamed by then!)

Wednesday was a pretty good day. He was kind of better- some pain but not bad. He was able to eat a little and seemed to be getting stronger. I went over to see him at lunch time and he seemed almost normal. He was able to tell me how to get a certain medicine that I was looking for- always helping me.

Thursday was not good. He was back to sleeping a lot and moaning with pain. He would wake up and seem to be better so we were hopeful he would get better. I went to sleep Thursday night and woke up a few hours later in a panic that I should have to take him to the emergency room again.

Friday morning we called people in his ward to give him a blessing. The blessing was nice because it said over and over that he "could be comforted- that things would get better for him." We went to the University of Utah hospital because that is where he had the procedure and also where his gastrointestinal doctors were. All day in the ER. They gave him a different pain medication that seemed to help his pain. But is also affected his cognitive abilities. He was not sure what was happening and that was hard to watch.

He mostly slept while we waited (ER's are very slow and irritating). But when he was awake he had some funny moments. My mom asked him if he knew what his name was- No. If he know where he was- No. If he knew what the doctors where doing?- "Yes, they are taking all of my money."  He kept trying to take the oxygen monitor off of his finger. It was a sticker with a light on the end and a wire that connected to the machines. It just bothered him and he kept trying to take it off. We had to keep telling him to leave it alone. It was helping him to stay healthy. He would leave it alone for a little while but then he would notice it again and start taking it off. My mom leaned in and said, "Stephen, that is checking your oxygen, you have to keep it on your finger." He looked at her and even though he was not understanding everything, I am sure it was a joke, "then why do YOU keep taking it off?" I could not stop laughing.

About 4:30-5:00 they doctors came in with some news. They had seen in the ultrasound that his gall bladder was inflamed and was indicative of gangrene. This was what was causing the pain! Finally an answer. This was great because we know all about gall bladders. They have caused our family problems since I was 3 months old. You take them out and you start to feel better- easy. It turns out it was not so easy for my dad. It was so inflamed that it would have burst while they were trying to remove it. So they had to put a drain in to remove the pressure. They would leave the drain in for 6-8 weeks, then remove it. The doctor said that there was a team of specialists who put that drain in and he did not know if they would be able to fit him into surgery that day. And we waited and didn't hear about  the surgery so we (and the nurses we asked) assumed it would be the next day.

At 8:00 they moved my dad to surgical ICU and announced that he was going to surgery right then. We were glad because we didn't want to wait, we wanted him to start getting well. My biggest concern after the gall bladder was that he needed nutrition. He hadn't eaten more than a few bites of food for 6 days and he needed nutrition. His body was starving. So after a quick surgery, he was back in his room. My mom stayed with him all night. He was agitated and didn't know what was happening so she did not sleep much. I went home because my mom wouldn't. I got some sleep so that I could be with him the next day while my mom slept. 

Saturday I went up to the hospital early. My mom was exhausted and my dad seemed the same but with less pain. He still was not himself. But the doctors said it was very normal for people with this much pain and all the pain medications to have disorientation. He kept trying to pull the I.V's and other wires and tubes, so they had to keep his arms restrained this was really tough for us to see.  Saturday he got a pik line and finally got some nutrition into his body. They did a lot of other monitors and things. The doctors were worried about how his stomach felt- it seemed really bloated or something. They had to put a tube down through his nose and it drained his stomach. Basically his intestines were blocked (something that can happen when you get as sick as my dad was.) So nothing was moving through and your body creates fluid and it was all staying in his stomach. Now we needed to get that system working again. His kidney function was a little concerning and they were monitoring his blood sugar and his blood pressure which were both pretty high. My sister Joanna and my mom went home to nap. (My mom tried to sleep but only succeeded for a little while.)

They got him up and walking down the hall. Which was amazing because he still wasn't sure what was happening. This was really reassuring to me because it was a sign that he was getting better. That night we went home with not much change for the better. We were just in the waiting game. 

Saturday during the night (so really Sunday) my sister Joanna woke up at 2:00 and knew that she should go up to the hospital. She was exhausted and had been sick so she should have stayed in bed. But she went up there anyway. She was so glad she did. My dad had woken up and had his mind back. He didn't feel good of course but he didn't know what was happening. Joanna was able to talk to him and explain to him the things that had been done. He felt so much better after talking to her that he slept better after that. 

Sunday, my mom and I got up there about 7:30am. (this is about a 45 minute drive from our houses and my mom does not like to do freeway driving and I wanted to be there anyway.) It was so good to actually talk to him. He was still sleepy. But he understood what was going on around him and could answer questions. I really believe it was because of the TPN (the nutrition going in through the IV.) He really needed that. I asked for it in the ER and right when he got in the ICU Friday night. It took until Saturday night at 6:00 until he got it. That morning was Mothers day and it was a great gift to be able to see him as himself. Because he was more stable, he was moved from ICU to a regular hospital room. His intestines were still not functioning and more fluid kept draining from his stomach. This was what he was fighting at this point. 

Mothers day in the ICU. 

My kids made grandma a mother's day card and My dad a get well soon poster.

 Up in his new room sleeping. This shows his tube in his nose that was so irritating.

Monday and Tuesday. Not much change. He was just trying to get better, They were watching his blood pressure, his blood sugar, having physical therapy, occupational therapy and mostly trying to get his intestines unblocked. The doctors all said that this was within the normal for as sick as he had been.  He just wanted a drink of water and kept asking for one. All we could do was give him a wet sponge for his mouth. It was hard.

I would be with my mom from 8:00 until 2:00 ish on these days. I would leave and pick up my boys from school and then get them to all of their activities and do scouts and homework and all the stuff that you have to do. Joanna would get up to the hospital after her work. I want to take a break to tell you how wonderful Andre has been with all of this drama. He basically took over doing everything for me. We have busy lives and he did everything over the weekend when I was basically at the hospital. I had neighbors who heard that we were under stress and brought us dinner. Mothers Day I came home at 3:00 and Andre and the boys had dinner made and I got to hang out with my sweet family that I hadn't seen for days.

Wednesday seemed to be a better day. He seemed more healthy. In the night he had pulled the tube out of his nose in a moment of not understanding why it was there. So the doctors decided to see if he could drink. he had some water, juice, jello, chicken broth, etc. just a few swallows. The doctors felt like he should be able to go home on Friday.

This is my dad on Wednesday eating Jello. This is his George Albert Smith look. He he hadn't shaved for a long time and his hair was too long for his electric shaver. My mom tried, and it was too painful- they just left it in a goatee type thing. 

Thursday he did not seem better. He was so tired and could not do anything. They had cleared him to eat some solids because he had eaten some liquids and Jello the day before. But really, he only had a few bites of a few things. The doctors took him off the the Nutrition I.V. because he was supposed to be eating regular food now. In my non-doctor opinion, this was a mistake. a few bites of jello does not make him healthy enough to remove nutrition. Thursday afternoon he was too tired to walk with physical therapy. We were hoping that the sleep would help him recover.

The whole time he was at the hospital, even when he wasn't aware of what was going on, we would talk to him about his kids and grand kids and it calmed him. He loved to just listen to stories of the people he loves.

 My mom reading to him about his grandkids while he was awake.

Friday May 13th. Remember, if he was better- they were planning on sending him home this day. He was still sleepy. But he was also not really aware of what was going on around him. He was back to not making sense when he talked. And sometimes didn't remember his name or where he was. We asked the nurses about this. They had a nurse and a doctor in to do an assessment on his cognitive abilities. He was able to answer their questions much better then when we talked to him. He still was only taking a bite or two and not really wanting to eat. Mom and I both knew something was up but we didn't know what to do about it. We talked to a doctor at 10:00 that morning. We all felt like he could not really go home because of how weak he was. We told her that we felt like he needed that nutrition I.V. back. She ordered it. We asked if he could get it right away because the other time the doctor ordered it, the nurses said that they had to wait until 6:00 at night. She said he should be able to get it right away. But it didn't come until 6:00 again. I was very worried about everything. But on paper everything looked fine. His blood pressure was back to normal. His bowels were working, he was just so weak.  I really felt like I should not leave. But I had to. And there was no reason to believe I should stay.

I left, got my 3 boys and Andre off to the Father/Son camp out, and Tanner and I went out to dinner before his Hapkido green belt test. His test started at 6:30. At 6:31 Mom called. Dad had collapsed and I needed to come up. A wonderful friend of mine named Rae, came and picked up Tanner and I raced up to the hospital. Joanna had arrived about 6:45 and I met up with them in the waiting room. They told me what had happened. Mom had been there as well as the nurse and were helping him get to the bathroom and he collapsed right in her arms. Within seconds there were 30 people in the room working with him. They had done CPR and got him breathing on a ventilator. He was back in ICU and we were waiting to be called back. There was a lot of calling back and forth between my brothers and sisters and trying to get a hold of Andre.  I got a hold of Andre who did not have cell service at some campground south of Utah Lake by texting any men in my ward whose number I had in my phone and who might get a text from me. It worked! Andre packed up and came home, got Tanner from my friend's house. I was relieved of any pressure about home because Andre was there. They all had a cry fest together because they knew that their grandpa was going to die.

At about 8:00? they called us back to see him. We walked in and dad was in really bad shape. I'm not going to talk about this much because it is really painful.  He was stabilized, unconscious, and really a mess. His lungs had collapsed because of the CPR (which is normal for CPR). They did a quick surgery right in the room to drain his lung. We were in the room too! They did so much to save him. We could tell they were doing all they could. Basically, there is a medicine they give people to restart their hearts (I know what it is called but can't remember it). Dad was on that medication as an I.V. drip. His heart could not continue beating if he was on this medication for much longer. But if they took him off of the medication, He would die. That is where we were. So we turned off the I.V. He has Never wanted to be kept alive by machines. He has made that perfectly clear multiple times. There was no point in prolonging his misery. We held his hand as he died very peacefully. It was horrible and peaceful.

What did he die of? Basically, heart failure. His heart stopped when he stood up. It was too much for him. His body had had too much pain, infection and other stress to heal. He also had only had a few bites to eat for almost 2 weeks. His body had no nutrition. It was just his time to go. 

Earlier in the week, I was fasting for my dad. I was listening to hymns and the words to one in particular jumped out to me. "...for courage to accept Thy will..." I knew, I had an undeniable impression at that point that my dad was in God's hands. I needed to be prepared for God's will. It was really hard. But knowing that it was God's will has really helped me during this week. My dad had such bad health that I expected that he wouldn't live anywhere near this long. We were blessed to have him in our lives.

And that is the story.