The Hardest Day, The Happiest Day
The process of how my dad coded and died, how we coped and the choices we made, and the process of donating his organs. This experience has put me in the shoes of patients who are facing tragedy and has made me a better nurse. This story was written on February 22, 2013, less than 24 hours after we let my dad go.
President's day. I had worked the night before and was just getting up in time for the kids to get out of school. I got the phone call that changed my life forever. I answered it to hear hysterical crying. At first i could not understand what she was saying, just crying. Then my step mother was able to form enough words to say, "Your Daddy is on the ambulance to the hospital. He did not have a heartbeat when they found him!" It took a few tries for her to be able to say the name of the hospital. Dad had severe asthma and a heart condition. Lately he had been feeling worse and talking about making an appointment with a pulmonologist. Just then the kids came in from school and I told them, "Grandpa's sick! I need to run!" and I jumped into the car and headed for the hospital. I called my husband on the way to let him know and he rushed home to meet the kids.
It seemed like forever before I got to the hospital. Along the way my step-mother, who was across town and stuck in traffic, called to ask if I was there yet. When I arrived and ran into the ED I told them my dad's name. I was asked to have a seat in the lobby. A few minutes later a social worker and chaplain rounded the corner. I knew this was not good. I braced myself and they asked if I was Allen's daughter. I said yes and they asked me to come back to a conference room. They said the doctor would be in shortly to talk to me. I knew it was very very bad and my heart started to crack and break slowly. My step-mom was led into the room and we both gripped each other in a tight hug and I felt the river of fear and grief pour out of me, and we sobbed. The doctor finally came in and introduced himself. He looked shaken. He said that when the paramedics found my dad at home he was without a pulse. They performed CPR in the ambulance but were unable to intubate. When he got to the hospital he had a heartbeat back but it came and went several times. He said my dad was hardest intubation he had ever done in his career. They were transferring my dad to a heart hospital nearby.
We thanked the doctor and drove separately to the heart hospital about 6 miles away and ran up to CVICU where my dad was supposed to be. But when I got there I was told he was still in the ED. Ran back down to ED and I was led back to a room where my father lay sprawled out on a gurney, dusky and motionless. They had just performed another code and asked if we wanted to continue to code him. My step-mother said yes and she held his hand cried with her head on her chest. I learned later that he had coded an unbelievable eleven times. I could not believe he was able to be stabilized. The skill of the medical team was amazing. They felt he had suffered an asthma attack or anaphylactic reaction or both.
They finally were able to get my father upstairs to the CVICU. They told us to wait out in the lobby. A chaplain arrived and asked if we wanted to pray. I am not a very religious person but my step-mom is, so we prayed. I found comfort in the words as tears poured down my face. My step-mom prayed for a miracle. I prayed that I would be strong enough to get through this, and get her through this too.
They put him in the big room at the end of the hall. When we went to see him he did not look like my dad at all. As a nurse who was trained in the ICU before tranferring to step-down, I was familiar with the breathing tube, vent, a-line, and numerous drips. What I was not ready for was to see my dad under all that. He was wrapped in cooling blankets and they were going to try to cool him down in order to save his brain. My step-mother said he had expressed to her once that if he had a situation like that, he wanted everything possible to be done to save his life. It was my instinct in the ED to tell the doctor I wanted to sign a DNR out of compassion. But honoring my step-mom's wishes and my dad's wishes to her, I stepped back and fully supported whatever decision she made. It was hard to do that. I did not want to lose my dad but I felt so sorry seeing him in that state. Later I was so glad we let dad have a chance.
The first twenty-four hours was awful. I kept thinking over and over that this could not be real. To protect myself my mind went into my nurse-role and I focused on his vital signs, drips, and vent settings. At first they said his lungs were not moving air at all. As the night progressed we started to hear wheezing and by morning his lungs were fulling inflating. His vital signs were remarkably stable, and he was making urine. I knew in my heart that dad as we knew him was gone. But he said he wanted everything tried, so for the next 24 hours we waited while he has cooling therapy that made his body temperature go down to 33 C. Since my schedule was flipped I was wide awake all night, but also the worry and emotional pain kept us both up. We kept vigil by the bedside, tried to talk about things other than my dad. Tried to stay positive. Step-mom refused to eat so a friend who was with us went and got her some food and encouraged her to keep up her strength. She took a few bites and pushed the food away.
I also had to make phone calls. My dad's parents are in their 90's and live out of state. I had to tell them what happened, and prepared them for the fact that dad was probably gone. My uncle and his wife arranged to drive the grandparents and they would arrive the following afternoon. I called my husband and told him, and asked that he take care of our girls and try to keep things as normal as possible.
On Tuesday morning we were asked to leave the room so he could get a bath and shift change could take place. I looked out the window in the lobby and saw the most beautiful sunrise with pink and orange-colored clouds glowing over the horizon. I took a picture as we waited. After some friends of my step-mom showed up I told her I had to go home and would get some sleep and be back that night. I didn't sleep much. I would close my eyes and see dad. I would remember some funny thing he said and then be jolted back awake by the nightmare of our present situation. When the kids came home I fixed them a quick dinner and had them make a sign for Grandpa to put in his room. At first they were going to write "Get Well Soon." But I knew in my heart Grandpa was not going to get better. I had them write "We Love You Grandpa," instead. I did not want to go back into that hospital room. I did not want to face my dad looking like that. But step-mom needed me to be there. I promised I would hold vigil all night if she would try to get some sleep in the recliner. They had started to warm him back up and the process would end the next morning. Then they would try to wake him up. She slept about 2 hours while I watched movies on the computer and tried not to look at dad for too long at a time. Step-mom would get up and hold dad's hand and pray, or plead for him to not leave her.
I thought about all the possibilities. What if did wake up? I knew he would not be nearly the same. I feared that my step-mom would spend the rest of her years caring for him as a total care patient. And dad would face a life of pain and frustration, if he was that aware at all. We somehow made it through the second night. In the morning the paralytic was turned off. The nurse called out his name and told him to wake up. No response. Not even a twitch or grimace. His pupils were checked. They remained fixed and dilated. Step mom said maybe since they had not turned off the pain meds yet, he was just still too sedated. I knew better, but I still had a vision in my head of dad waking up and lifting his head off the be and wondering where the heck he was. It was so easy to imagine. The sedation was turned off. Dad's pupils remained fixed. I shined my own pen light into his big blue unseeing eyes. Nothing. Dad was gone.
I called the family with the news as they were coming into town. My aunt stayed with my elderly grandparents while my uncle met me in the hallway. He looked like had aged ten years. I put on my nursing hat and prepared him for what he would see and we went in. By evening dad started to-- how can I describe it-- melt. It was like his face was sagging and his hands and feet were getting more swollen. He was looking less and less like dad. They did an EEG and found no brain activity at all. I feared that step-mother would not make the decision to let dad's body go. I should have been more honest with my feelings to her, but she was so fragile. I did not know that by not telling her my feelings, she felt abandoned by me. I was trying to respect her and not pressure her. She was trying to get my input and guidance. I went home after leaving her with some friends who would stay the night with her. I needed to get out of that room.
On Wednesday I sat the kids down and told them that grandpa was very sick and probably going to die. There was no easy way to tell them. I knew they needed closure so I called hospice and asked for some guidance on how to help my girls say goodbye to their grandpa. The grandpa that every week came to their piano lessons and then helped them practice at home. The grandpa who was so proud of them and told them so. Who played their compute games with them, who patiently listened with pleasure, and then told them stories of his childhood which they loved to hear. My youngest cried "How will grandpa know I have finished my piano piece now?" I said, "He will know. He will be with you always." The hospice person said that at age 9 and 12 they were "absolutely" old enough to visit their grandpa and say goodbye. I prepared them as best I could at home. My husband had to drive because I could not see through my tears. Just as we were approaching the hospital it started to snow. This is a miracle because we live in Phoenix, Arizona. It was not just a little bit of snow, it covered the street and cars. The girls got out at the parking lot and held their arms out and spun around and laughed and shrieked. I knew it was Dad trying to cheer up his girls.
The next thing that happened was by far the hardest thing I have ever done in my life. Ever. Moms are supposed to protect their kids from pain, to soften the bumps the world gives them. And here I was about to lead them into the room where their beloved grandpa was hooked up to a thousand tubes and wires, his body swollen, his eyes glistening with lubricant and unseeing. The tube in his mouth breathing for him. The other tube draining brownish liquid from his stomach. They saw him and sobbed like I have never heard them sob before. It was such a deep pain. I sobbed because of their pain. My husband had tears spilling over and he had to turn away and cry. We hugged each other and just hurt together. After the tears slowed down I told them it was okay if they wanted to say something to grandpa, and it was also okay if they didn't want to. There was no right or wrong thing to do. My nine year old held grandpa's hand. I got a picture of her hands holding his. It is a precious keepsake. It was time to leave. I hated leaving step-mom for a night but I had said my goodbyes to dad. I could not emotionally do it anymore. I had to take care of my kids. A friend offered to stay the night with her.
We had a family meeting about what was next. We felt stuck. Dad was still alive in body. We were afraid that step-mom would not be able to let him go. We were afraid to break her or pressure her when she was hurting so much. Again I wish we had communicated better. She called us later and said she was gong to donate his organs. I was so proud of her. So relieved and proud and thankful.
On Thursday we went back to the hospital. I was not planning to see dad again, but the people we needed to talk to were in the room. I stole a glance at dad and his face had continued to "melt" and his urine was getting darker and he was more swollen. A woman from the donor network met us and said she would be with us through this process. She said it normally took 24 hours or more to prepare for surgery. My step-mom said that was too long, she had made her decision to let dad go and he needed to go sooner. She made some phone calls and found a doctor who offered his time to it that afternoon. We decided together what organs to donate. We decided to donate his organs and skin and eyes but not his bones. It was too much for step-mother to envision his arms and legs being cut into.
My aunt and husband were researching funeral homes and went out to check on some. We wanted to bury dad as soon as possible as waiting would be hard on my grandparents. I could not believe that we were making plans to bury my dad. He had been alive just days earlier.
As we were waiting for the time to approach, our nurse that day pulled out his ipod and showed us a picture of a beautiful baby boy. He said that was his son, and he had been born with a heart defect. Thanks to an organ donor his son got heart valves that saved his life. He said it was an honor to work with us, to see the other side of the process. He had tears in his eyes and we hugged. It could not have been more perfect of a sign that this was meant to be.
At 1:30 PM a nurse from the surgical team came to meet us in the room, said what an honor it was to do this. He had tears in his eyes. A few minutes later the rest of the surgical team came up dressed in green . They wanted to meet our family. They asked if we wanted any music played for him and we agreed on some music. They took the card I had written to honor my dad before the surgery and said they would read it and have a moment of silence. They let us take our time. A chaplain came and we circled around dad's bed and prayed once last time. I put the girl's "We Love You Grandpa" poster on dad's legs as we left and asked that it stay with dad until the surgery started. It was time. We held each other and slowly walked down to a conference room and I recognized the sound of dad's bed and vent going down the hallway. My dad was now truly gone.
We made our ways to our cars and went home. Later that evening we had a family dinner at dad's house. We didn't want the house to be too empty for step-mom to have to bear. She had her mother staying with her, too. Somehow after we knew that dad would be released that day, a weight lifted. We told stories of dad and mostly laughed. We cried a little too, but then someone would come up with another story about dad that lifted us up. Dad was a generous, warm, funny person. There were many stories to go around. In the middle of dinner the phone rang and I answered it. It was the woman from the donor network. My heart hurt again knowing that dad's body was alone somewhere in a morgue. She said she had good news. They were able to use dad's corneas, and they were able to use his liver! Someone that night was getting the best news of their life thanks to dad. We can donate our time and our money, but only dad got to donate life. There is no greater gift.
I went to the main room and told everyone I had an announcement. "Guess what? Someone is getting dad's liver!" We all were overcome with tears again, but happy tears mixed with sad ones. We knew that somewhere out there, a family was thinking of us and thanking us for helping their loved one to have a new chance at life. Somewhere out there was dad's liver making someone better.
Dad is still gone. It's now in the wee hours of Friday morning as I write this. I just went through my photos trying to find good ones of dad for the funeral. I found many pictures where he was the one behind the camera. I saw what he saw-- me running high school track when he was my coach. Me playing clarinet in bad. Me holding my newborn baby. Me graduating from . The kids piano recitals, the photos he sent me because he always takes better pictures than I do. Thanksgiving and Christmas, the whole family except him because he's taking it. And I see a lot of happiness through his point of view. I see how he saw us and how proud of me he was, and how he loved his grandkids. He had a hard life. He had to bury my six year old brother. He divorced. He remarried and the last twelve years of his life were his happiest. I feel in some ways he was just starting to live.
Tomorrow we will pick out the flower and casket. It will be hard. But tomorrow someone somewhere is getting used to a working liver. Someone else will be able to see clearly through those eyes of Dad's, see their own happy memories. On Tuesday we will go to piano class and dad's car will not be parked outside the teacher's house. But the girls will still have the gift of music from their grandpa. On Thursday I will go back to work on my unit, having grown by living through what they have for days or weeks. And in April my step-mom will celebrate their anniversary and both their birthdays. It will be hard, but what a gift we had in knowing him. At Thanksgiving we will miss hearing his same jokes over and over and probably tell them ourselves. And by next February dad's liver recipient will be celebrating one year of new life.Last edit by Joe V on Feb 22, '13
About anon456, BSN, RN
anon456 is a pediatric step-down ICU nurse who lives in Phoenix, AZ
Joined Apr '10; Posts: 1,126; Likes: 2,808.Feb 22, '13(((((anon456)))))) I am so sorry for your loss. What a beautiful and heart breaking story. Praying for you and your family.Feb 22, '13Stories like this remind me that there is beauty in the breaking. Thank you for sharing. I am sure that your heart is hurting. My thoughts and prayers go out to your family.Feb 22, '13anon456, I am so sorry for your loss. You and your family are in my thoughts and prayers.Feb 22, '13Thank you for sharing what I know was a very difficult story. I lost my dad a few years ago, and I know how your heart is breaking. It is so hard being the nurse daughter, when at a time like this all you want to be is daddy's girl.
Hang on to those wonderful memories for that is what will get you through the next hours, days and weeks. I know you said you aren't very religious but that you felt comforted by the prayers of the chaplain. I am praying for you as you go through this time of grief. May you feel comfort in knowing that others who read your story will feel your pain and will be holding you up in prayers and thoughts.
May God bless you, your step-mom, your husband, and your dear daughters.Feb 22, '13I am so sorry for your loss. Thank you for sharing this beautiful story. My heart just goes out to you and your precious family.Feb 22, '13So sorry for your loss. It is inspiring how your family has pulled together and been so supportive of all the decisions made, even when you didn't agree. This was beautifully written (I cried my eyes out), you can feel it when you read it--your heart went right into this story. God bless you and your family.Feb 22, '13Thank you for sharing. What a wonderful and heartfelt expression of your love. I'm so sorry for your loss and pray for those who will be recipients for your dads organs-he lives on...Feb 22, '13So sorry that you've had to go through this heartbreaking process. Praying that God continues to bring you comfort in the next several months.
I also lost my father recently, I had a few weeks to prepare for it. Seeing him as the patient and being the one that all the family looks to for advice was hard. He was also able to donate his corneas. My children are 3 and 5 and both came to the hospital to visit him before and after his death. Having them there to hold was the comforting thing to me. My 5 y/o daughter did great with everything, every once in a while out of the blue she'll say something like, "Mom, aren't you sad that Grandpa died?" Then I remind her that Grandpa is no longer in pain and he's up in heaven where he got to meet Jesus.
Feel free to PM me if you ever need someone to talk to.Feb 22, '13I'm so sorry for your loss. May you and your family have the strength to pull through this so so difficult part of your lives. Thank you for sharing the storyFeb 22, '13I can't stop crying. There are no words to convey how sorry I am for your loss, but I'm also so glad that you have wonderful memories and were able to be there for your father and for your family.
Thank you for having such inspiring strength, and thank you for sharing your story.
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