Last night after I left to be with my boys, things changed quickly. Julie wanted to go to the bathroom on the commode and with some help got up. She desaturated quite a bit down into the low 80's. The RT came in the room and worked with settings on the BiPAP to give her some relief while she sat there. They weren't having any luck. He gave her 100% oxygen and increased her peak pressures among other things and she wasn't recovering. She told her mom, "I think the end is near." About a half hour later, she told her to have me come up because she was getting scared. I was out for ice cream with the boys to talk to them, and more importantly get them to talk if they wanted to. Ben was very matter of fact about everything. He has adapted pretty easily to the roller coaster. After he told me he thought she would die I asked them what they thought about that. "I think it's good because she will be able to see her best friend James." Jack was quiet and just said "I don't want her to die." I talked to them more about how she is having a really hard time breathing and that when the time comes, she won't feel that any more; she will be able to breathe freely. Jack listened and ate his ice cream. They still transition to the silliness of a 7 year old during these conversations, so right now it does not consume them as it might an older kid. I just want them to feel open to talking to me about it.
When I got home, I started the routine of getting them ready for bed. The boys were happy as ever playing in the house with their little brother. I had plugged my phone into my computer so I didn't see the last text that she wanted me up there. I finally saw this text sent 30 minutes before. "She just told Dr. Beck she wanted to pass so Julie wants to talk to you about a couple things." I kicked it into high gear and called Linda. I gathered the boys and told them "Get your shoes on." 'Why?' "It's time. I think your mom is ready to leave." They both welled up and came to me and hugged me. Ben adapted quickly and started talking about James and her reunion. Jack was sullen. I think he really likes to have control of what is going on that he is reacting this way. Ben conforms to Jack most of the time so that might be why he is adapting on the surface. Driving up, it took everything out of me to keep it together. I couldn't help but think of these little boys hearts. We talked about the afterlife, resurrection and they asked some questions about mom's body when she was resurrected. I explained to them that we will be restored to a perfect and proper frame. Everything will be restored. Jack asked me if she would get her old lungs back. "Yes, but they will work just like yours and mine do. She will be young." I could tell they were getting done with the conversation so I asked them if they wanted to stop talking and listen to some music. They both said yes and Ben suggested his favorite song "Radioactive." I cranked it up for them.
When I got here I had a lot of questions for Julie, her parents and the doctors. I was really confused and wanted to know the timeline of events. I asked about her pressures they tried to deliver, the conversations, and I was asking Julie a lot of questions. Initially I told her we can't quit. She said to me, "I'm not quitting, I'm just wiped out....I don't want to leave, my body is just done." As always she had pushed the envelope. I quickly listened to her once she told me this and then I started to just talk to her about how she came to that conclusion. I was comforted to find out that she had made the decision before she had talked to the doctor. Once the doctor came in she told Julie that we were headed back towards intubation and recounted what that looked like. Julie said she did not want to go back on the tube. That could have lasted months. She asked her what she had asked me on paper the day before: "How do I die comfortably?" They explained that she would have oxycodone for pain, ativan, for anxiety (both drugs she was on low doses of since chemo), and of course morphine when she was air hungry. They had withdrawn all meds but these when I arrived. Julie was tired but was chatting with us.
When I walked in with the boys I anticipated she would be a wreck...she was cool as a cucumber, just like the night she was called for transplant. She was beaming when Charles sat on her bed and said "I lob u Mom" and "Pitty Mom." We told him to give her kisses and she was elated. She was tired but she was very happy. Jack wasn't too comfortable even hugging his mom. When we took a picture he leaned away from her. I was asking him to hold her hand or hug her and Julie just gave me this look like, 'Leave him alone. He is fine.' She swatted her hand at me in a gesture to say 'It's fine, and I'm fine. Let him be.' So I did. I couldn't believe that even as her son was separating himself from the situation, she had the fortitude to not take it personally, and to put his feelings before hers. She really didn't even care, because she knows how Jack really feels. Julie put people and their feelings before herself. Ben was a little more willing to be with her and to lay in her arms. She told her mom later, "I was asleep, and then all of a sudden I woke up and we were all together!" When she and I were alone, I said to her, "You have to help me with these boys. I don't,,,I don't know what to do to help them get through this." She looked with a grimmaced faced and said "You know what to do." It was her way of saying, quit it. I was once again put in my place. She is right. I have known what to do. We have been doing it all along together, talking and listening to them about this life and how it interlinks with the next life.
The boys left and we spent much of the night standing by her side waiting for her to pass. It occurred to me very early on that she was not going to die that night, but I didn't want to be the crazy husband in the room holding on to a dream. About midnight I sent a text to Rick that I didn't think she was going to die that night. Once it was clear to everyone that she was pretty stable on 6 liters of oxygen, they went home. It wasn't till 3:30 am that I went to bed. I had spent the first part of the night laying next to her at her request in case she became short of breath. At 3:30 I decided to give her a blessing and release her from this world. I had the distinct impression it wasn't time yet but it was a good exercise for me to hear myself letting go. I went and crashed on the pull out chair till 6:30 am. I woke up to a dream that I was having a BBQ and someone had a terrible cackle in the other room. I was sshhhing them in my sleep. Turns out it was someone in the unit talking and laughing outside my door. What a moron.
Two things happened the last 24 hours that I think are typical of Julie. First I had been wearing a mask because I had sneezed yesterday. I didn't have one on when I was there with the boys and she asked me to put one on. I double checked that she knew she had decided to go. She said "I know, but it just shows me you still care about me." Once again, she put me in my place, but it was so endearing. Secondly, she asked for insulin the night before. She started to wake up when everyone was there. She looked at the counter and saw an apple I had bought in the cafeteria earlier that day. I never buy an apple but I just decided to that day. She squinted her eyes at it and said, "Is that an apple?" We asked her if she wanted it and she said "Yeah." She sank her teeth into this juicy red delicious apple like it was the forbidden fruit. It made us all want an apple as we watched her enjoy the first real food since she was admitted 10 days ago. BJ Butler mentioned he brought her cookies but wasnt sure it was approp..."You have cookies?" We went and got her some cookies and she sank her teeth into those as well. She was loving life. Her family was there, Her boys were there, and she was eating some great food. What else do you need in life??
I looked at my phone when I woke up and noticed that no one really knew what had happened. I hadn't posted anything other than a very optimistic post, and I hadn't reached out to anyone other than my parents. I knew I had just a few hours before the Julie circus arrived. I started this post then. Now it is midnight and I am finishing it up. When she woke in the morning she knew she had a low blood sugar and asked for orange juice. Her stomach was growling all morning. I fed her a piece of pancake, yogurt, water, ensure, and a piece of cookie. If she was more awake she would have kept eating.
I spoke to Julie's Lung Transplant doctor who came up to see her. I told her how indebted I was to her, Dr's Liou, Raman, Carveth and the entire pulmonary team for keeping my wife here. The entire team supported us as did the respiratory and nursing teams. Julie and I had 10 years together. Four of them were in complete bliss, free of lung illness, and the rigor that is associated with it. We had vacations, barbecues, camping, bickering, planning for the future and just a completely normal life without any hospital visits. Dr. Cahill is typically all business, but Julie loved her. She knew she really cared about her. She would put notes on her phone before her clinic visits so she wouldn't forget anything and be able to be succinct. She deeply respected her doctors time. I wasn't as good at this as she was. She told me with tears in her eyes "It was an honor to care for Julie." I told her Julie always knew she would support her. She said, "If I gave her an inch, she'd always go a mile." She and I were really crying together for a woman who had impressed our lives so much. I am forever indebted to her for believing in Julie and supporting her in her "calling" to have a child. Julie risked everything she was given to have a baby. She saw this as the ultimate sacrifice. It was why she was here. As a close friend told me tonight, nothing could change her mind; fear, others opinions, worry etc. She saw the big eternal picture. "She knew what her purpose was and she bravely and faithfully chose that road fully aware of what she was risking."
All of my siblings who hadn't come up yet were able to. All of them were able to get to talk to Julie this week. Many of Julies friends were able to come up and talk to her. Each person really got some feedback from her. We had one friend calling other friends and putting them on speaker. I was astounded that she would wake up and say hi to them. She was probably 50% worse late that morning. She would be consoling people and saying "Awwwe, you're so sweet." She told her Aunt Karen, "You're a really good person." As the day wore on I needed to know that we were doing what she wanted. The doctor suggested we remove the oxygen cannula. She reiterated that Julie came to them and was very comfortable with her decision. I had to ask myself what she was implying. Were we prolonging what she wanted to have happen comfortably? This was by far the hardest part of the day. This doctor went in and spoke to her parents. Before I knew it, she was off the oxygen. I am so conditioned to help my wife when she is in need that watching her lips go blue and her fingertips as well was heartbreaking. I asked Linda if this was really what we should be doing. She assured me that it was. I completely broke my heart to watch her. They had given morphine to take away the sensation of being air hungry. She took long breaths with pauses between for nearly an hour. As I watched and as the color came out of her, I began to come to terms, (finally) that this was it. She had spent the night doing relatively fine, but increasing in CO2. Her mind was made up but her body was not. During that last hour, her heart just kept going, and going, despite being starved of oxygen. She slowly stopped breathing. We kept thinking it was her last breath, and then she would breathe. It was slow, but it was very comfortable. She looked like she was in a deep sleep. I had my eyes focused on the throat where I could see her little engine that could heartbeat. It just kept going even when she was in between breaths that were spread by seconds. The hour seemed to crawl, and when it was over, I thought it had been 20 minutes. Julie passed away at 3:01 on February 28, just 3 days shy of her 36th birthday. She couldn't wait 9 more hours so we could celebrate every 4 years. March 5 will be her 5 year anniversary for her transplant.
Things did not turn out the way I had hoped for but then again I knew I would be surprised either way. I know I have egg on my face, and it tastes delicious. We were at peace all the way through. We didn't spend this last year with Julie fretting. Even if things aren't going to get better, that is no place to live. We always hoped it would get better and I will never regret that deliberate decision. We were able to enjoy each other rather than stress about if she were to die what we would do. We would talk about what that might be like, but we planned for a future together. I am not let down because I gave it my all. Julie gave it her all. I have no regrets of hoping for the impossible. I have no regrets for praying for what seems futile. We were happy, and we are closer to our Lord and each other because of it. It does not change my faith. It substantiates it. The fact that I was able to handle today is evidence enough that there is a loving God looking out for me and my little family. This is no doubt a result of the hundreds if not thousands of prayers that have been said on our behalf. Last week she had so many pulling for a miracle. We got it. Julie was able to decide what she was going to do. I can live with that for the rest of my life. She was in the drivers seat with the Lord as her co-pilot. I was torn up about making decisions I wasn't sure she would agree with. She assured me that "I think we made the right decision" to intubate, and later, "It's time for me to go."
The funeral is slated to be this Friday March 4, at the LDS Chapel on Gregson and Kenwood St. in Salt Lake City, UT. LDS Chapel Gregson/Kenwood There will be a viewing the night before Thursday March 3, from 6:00-8:00, and again on Friday March 4 from 9:30 to 10:30 with funeral services from 11:00 to 12:00 and the burial service at Wasatch Lawn just after 12:00.
Please don't feel you are imposing if you do not know me but know Julie or vice versa. There are two things you don't want to miss in life and funerals are one of them. This will be a great day where we will enjoy telling stories about a woman who has affected us all in such a profound way. Sidebar; many of the stories will be entertaining and humorous as you mingle with those who know Julie. It will be a day of love and celebration. Thank you for everything, and God Speed.