I have finally decided that I need to write about my last day with Jonas. It haunts me. I am hoping that by writing about it I can move past the pain and not remember all the regret I have of that day. Many of my memories of that day are vague and blurry. It seems so dream like, but I will try and make sense of it. My dear family...don't read this if you are not ready to hear the details about that most awful day.
The regret starts with February 21st when I left the hospital early. My mom had told me earlier in the day that Jack was having a really hard day and missing me more than normal. I decided that since Jonas hadn't really been awake much that day that I would leave about 3:30 instead of my usual 6:00. Why didn't I stay? Why didn't I have "a feeling" that I should stay and spend more time with him? I get so angry with myself for leaving that night. I should have stayed and held his hand all night.
Regret #2. My mom asked if I was going to the hospital first thing in the morning like I usually did. I told her that since we were having a meeting with the doctors at 4:00 that I would go in around 2:00 and spend the morning with Jack. I would usually try and get there before 10:00 so that I could talk with the doctors during their rounds, but since I would be seeing them at 4:00, I figured I didn't need to rush. Why didn't I go in? Where was that "feeling"? I absolutely hate myself for not going to the hospital at 9:00 like I normally did.
I don't want to sound like I am angry that I spent time with Jack. I know he needed me and that he was having a really hard time with me being gone so much. But I think he would have been fine without me for 24 more hours. Just 24 hours...I left the hospital around 3:30 on the 21st...Joe died at 3:30 on the 22nd...
Jack and I had just finished watching Cinderella (his current favorite at the time), it was 11:25 and my cell phone rang. It was Joe's mom, Kathy. Why the nurse called Kathy and not me I will never know. I was so upset that the nurse had done that. But that doesn't bother me anymore. I got the message and that's all that matters. I know Kathy felt bad that the nurse had called her first. It wasn't her fault and I love Kathy dearly. I was just irrational at the moment. Kathy said, "Brit, the nurse just called and said Joe's heart rate is dropping and they are having a hard time getting it to stay up. She said we should go in to give him support and see if us being there will get his heart rate to stay up..." "OK", I said. "I have to go" click.
My mom was bringing Ben home from Kindergarten. I called her panicked and on the verge of hysterics. She was going to drop Ben off at her house and then come to get Jack so that Ben wouldn't see me like I was. She got there really fast and I flew out the door saying I would call her.
The drive to the University Hospital was awful. It took forever. I sobbed the entire way there.
When I got to the hospital I saw my sister in law's mom (who works at the hospital) just getting off the elevator. She had been upstairs to check on Joe and saw what was going on. She saw me running towards the elevator and came up with me knowing it wasn't good. I remember being so panicked in the elevator. It wasn't going fast enough. Then someone held the door for someone else to get on. I was shaking and saying "come on, come on". We stopped at the 3rd floor.....why! This is taking too long! We got to the 4th floor. I ran out of the elevator and rounded the corner to the hall Joe's room was in. His room was at the end of the hallway. There were so many doctors and nurses standing outside his room. Oh no, I thought....this is not good. I ran down the hall and into his room, my focus on Joe. He was laying there with monitors attached to him. A crash cart in the room. More doctors and nurses inside his room. I remember one of the female doctors had tears in her eyes. They all looked so worried and sad. "Joe" I said. "I am here, I am here, I am here." I remember just dropping my purse right by his bed. I held his hand. He was moaning. It is a haunting moan. I will never forget the moaning he was making every time he breathed out. They tried several times to get his heart rate to stay up. They would give him medicine and it would go up, only to drop down a minute later. I remember staring at the heart rate monitor attached to the bottom of his bed. It would go up and I would feel calm. Only a minute or two later it would go back down. "This is not supposed to be happening...we have a meeting at 4:00 to plan what we would do if it ever came to this....the doctors said there was no hurry for the meeting...just something they like to do so that there is a plan...what is going on....no one warned me about this...no one told me this might happen today...why wasn't I here at 9:00...I could have said good-bye if I had been here at 9:00 or even 10:00" ...I think things started to go downhill for him about 10:30, but I am not positive about that.
They wheeled him out of his room. He had not been able to talk to me. I remember seeing Joe's sister Melissa walking down the hall. She was crying. I was in shock. We walked to ICU with him. He was still doing his moan breathing. I was still staring at the heart rate monitor at the bottom of his bed. The two people taking him to ICU got lost. We missed the hallway to turn to ICU. What the crap?! My husband needs to get there now! We turned around and went down the correct hallway. They took him into a room.
Regret #3. The doctors said we needed to leave while they did some testing or whatever it is they do in ICU. I should have DEMANDED to stay. I should have said, "He is my husband! I am not leaving his side!" Why wasn't I forceful about that? Why did I just obediently walk out and go to the waiting room? My husband was dying! I should have never ever ever left him!
Melissa and I sat down in the waiting room. I started crying.
I remember Kathy and Denny (Joe's mom and dad), Tyler and Mandi (Joe's brother and sister in law), my mom, and Joe's grandma all getting to the waiting room at some point. I feel like we were in the waiting room for hours. I remember conversations were going on. Light ones. No one really daring to talk about what may be happening in the ICU. We were just waiting. Waiting, waiting, waiting. The neurologist finally came into the waiting room to find me (of course I had finally been brave enough to use the restroom....knowing they would come and get me the second I did). My mom told him where I was and he told her to send me into the ICU when I got back. My mom came and found me and I rushed into the ICU. Things are even more vague and blurry in my mind at this point.
I walked in and he was hooked up to so many monitors. They had put a blood pressure monitor in him so they could get constant readings. He was laying there with his eyes closed not really responsive. The doctor said, "Jonas needs a breathing tube and pace maker in order for him to keep living. I am under the impression you want me to do everything possible to save his life?"
Regret #4. I should have screamed. "YES!" Save my husband! Do everything possible! Don't let him leave me! Please, please, please save my husband! Instead I just looked at him. I didn't know what to say. I didn't know what Jonas would want. I can't make this decision. I can't make simple decisions let alone major ones. I knew Jonas didn't want to live in the condition he had been in...I knew that the day we filled out a power of attorney form I asked what I should do if it came to the point that I had to make a decision, he said "well, just let me go," but it was said carelessly without much thought. He was out of it and I don't know if he was serious or just being sarcastic.
I told the doctor, "I don't know". He asked me if there were other family members here that could help me. I said "yes", and walked out the door to get them.
Regret #5. Why didn't I just make the decision myself? The scene in the ICU room was horrific. I will never get the images or sounds out of my head of people crying, doctors hovering, no one knowing what decision to make, me and Kathy trying to get Jonas to tell us what he wanted. It is a heart breaking, wretched memory. Family members were telling Joe they loved him and I think he was trying to mumble the words I love you back to them. I don't remember if he said it to me, but I talked to Joe's sister in law Mandi about it a few months later and she assured me that he said he loved me and that he never took his eyes off me. She said he was just intently staring at me. I wish so desperately I could remember that. If I would have just told the doctor I wanted some time with Jonas before I went and got his family, maybe I could have got a response from Joe. There wouldn't have been so much confusion. Maybe he would have been able to communicate his wishes to me. I am so angry at myself for the way I let things spiral out of control. Why didn't I take the time to talk to him alone? Why do I always need people to help me make decisions? Am I not an adult that can do things on my own? Obviously not. Maybe this would have been my chance to say good-bye to him. Instead I brought everyone in and it was pure chaos. I didn't get my good-bye.
At one point during the confusion and chaos, Kathy and I were trying to get Jonas to make the decision. Kathy said, "do you want to go home Joe?" He spoke the only words that I distinctly remember . "Yes, mom. Lets go." He said it pretty forcefully too. I think he could feel all the tension and horror going on in the room. But we still didn't know what to do. I didn't know what to do. What did Jonas mean? Was he talking about our home in West Bountiful? Or was he talking about his Heavenly home? Was he really saying he was ready to leave this earth?
My saving grace was when one of Joe's liver doctors came into the room. He had been watching us trying to get Jonas to decide what to do. He was witnessing the chaos and horror we were feeling. He came over to us and said. "This is fruitless. Jonas is a very very sick man. Even if we put a pace maker in him he still has so many other health problems. His liver is failing." I felt this thousand pound weight being lifted off my shoulders. I breathed a sigh and said, "OK, we won't go ahead with the procedure".
Regret #6. Why did I say that?
I am not sure in what order the next events happened, but I only remember bits and pieces starting from this moment.
I remember one of the doctors telling me that Jonas would probably die later that night or early the next morning. I remember sitting next to Jonas on a chair, laying my head on his stomach just sobbing. I remember hearing the sounds of Tyler and Mandi crying. I remember seeing Melissa and Kathy crying. I know Denny was having a really hard time with the decision that was made, it wasn't until Dr. Hutson came in and talked to us that he felt a little more at peace with it.
Dr. Hutson was Joe's liver doctor and the one we had been seeing for the past few months in clinic. We all thought very highly of him and knew he was very well respected and the best liver doctor in Utah. He had been in clinic and had heard that Jonas was in the ICU and wasn't going to make it. He left clinic as soon as he heard and came up to see Joe in ICU. He talked with us for a bit and was stroking Joe's head telling us what a warrior he was. He told us that it was Joe's time and that putting in the pace maker and breathing tube would not save him. He was too sick of a man.
At one point my mom had everyone leave the room so that I could be alone with Joe. I don't remember for sure, but it seemed like only a few minutes that I was alone with him and then a doctor came in. Regret #7. Why didn't I demand more time alone with him? During the few minutes I had with him I remember telling him I loved him and that I would be strong for him and the boys. I remember singing a song into his ear. I remember the song I sang, but I will keep that to myself. Jonas wasn't speaking at all at this point. I don't think he was even trying. His eyes were closed and his body was quiet...for the moment. I don't remember what the doctor said when he walked in, but I remember he left and then Melissa came in crying and said, "they told us to come and say our good-byes." After that I just layed my head on Joe's stomach again and cried. I remember hearing Joe's family saying good-bye to him, but I only have small flashes of memories of that.
As I was laying on Joe crying I remember that his breathing started to get noisy again. The moaning started and I felt like he was in pain. Like he was struggling to breath. I remember seeing my mom walk into the room and I told her to tell the doctors to get him something. He was in pain. He needed help. A nurse came in and gave him morphine. Before it kicked in I remember saliva and blood coming out of Joe's mouth. I remember his eyes being opened and the haunting look of his jaundice eyes. His eyes were huge. They were a dark yellow and they looked hollow. He was not there. His eyes at that moment will forever be etched in my memory. A memory I wish I didn't have. When I am remembering this day, I always have flashes of yellow eyes, blood and drool, moaning, and crying. When the pain medicine kicked in he relaxed and I remember the nurse wiping the blood from his mouth. I was alone in the room again except for the nurse. I don't know when that happened. I don't remember what I was doing. I think I was stroking his hand. I remember asking the nurse if he was gone. She said almost. A few minutes later she said, "he is gone." It was 3:30 on February 22, 2011.
I remember soon after that Melissa walked in and said, "Is he gone?" I just nodded my head. I remember the family coming back in. I was numb. I was in shock. I remember that I wanted to get home and talk to my boys before anyone else told them. My mom called her house and told my sisters to try and act normal. Don't let the boys know what happened. I remember my dad getting to the hospital and me hugging him. I wasn't crying. I was numb. I didn't understand what had happened. The doctors thought it would take so much longer for him to go. They had no idea he would die on this day. They didn't know what had caused it. They were just as shocked as us. He went so fast. Faster than anyone had anticipated. I remember talking on the phone to the eye donor foundation. "Yes, you can have his eyes". They asked so many questions. I don't know how I got through that. I think shock was helping me. I remember talking to Joe's lung doctor (he had come in earlier to say good-bye to Jonas). He came back to ask if they had permission to do an autopsy. Of course I said yes. I was desperately wanting answers. I remember sitting next to Joe until his body started to get cold. It got cold so fast. I remember leaving with my dad. Regret #7. Why did I leave so soon? Why didn't I stay there until they kicked me out? Why did I leave my husband? I should have stayed there holding him until I was forced to leave. I made so many stupid decisions on this day. I remember walking down the hall, back into the elevator, back out to the parking lot. Things were so surreal. Was this really happening? Was this a dream? I remember getting in my dads car and a few minutes later feeling like I was going to throw up. A wave of nauseousness hit me. I remember texting my friends letting them know what happened. Why I did that in a text I will never know. I obviously wasn't thinking.
My dad dropped me off at home and then went back to his house to get my boys. He brought them in and then left. He knew I wanted to be alone with them. The first thing Sam said to me when he walked in was, "mom, a girl at school today told me our daddy was going to die." I wanted to scream, "of course he won't die! He is a fighter. He has overcome so many illnesses and has always gotten better. Of course he won't die!" I just said, "she shouldn't say things like that to you." I told them to come and sit by me on the couch. Jack was drinking his milk. Ben was next to me. Sam was on the couch across from me. I told them that their daddy was a warrior. That he was so strong. That he loved them so much and that he was so proud of them. It's strange, but the night before I had been talking to them about their uncle Jesse that had died on February 11, 2002. We had talked about where he was and what happened to him. So I reminded them about their uncle Jesse and that he was up in Heaven with Jesus. I then told them that their daddy was up in Heaven too. That he had died and he wouldn't be coming back home. Sam and Ben started crying. Jack had no idea what was going on. He just looked nervous. I just sat on the couch hugging my sobbing 5 year old. My 7 year old didn't want to be held. He just stayed on the opposite couch crying. It was a heart wrenching, horrible scene. It was the worst day of our lives. There was nothing peaceful about it. I only felt confusion, anger, numbness, and shock. Will I ever be at peace with that day? The pain of that day is not as sharp anymore. I think I am good at blocking it out. Even as I write this I have distanced myself from the memories so that I don't think too deeply about them. If I dwell on the details that replay in my head I go to a very dark place. A place that is hard to climb out of. I plan on writing about the days leading up to the funeral but will do it another time. Even though I have not dwelled too much on the details of that day it has still been draining to write it. Hopefully one day this will be the start of healing for me on that most awful day.
