Dr. Carveth saw how terrible Julie was and how thick her secretions were and started the ball on getting her IV antibiotics. By the middle of the day she had her first dose of Meropenem. She wasn't very responsive all day. Toward the afternoon, her family started to show up. She acknowledged them when they came in. Linda asked if we were being too loud and she said no. She was just glad her family was there. She spent the time resting. Toward 4:00 pm, they decided to move her into the medical ICU. This was probably a bit overdue so we were grateful and apprehensive we had to go to a higher acuity unit. We were pleasantly surprised that the attending doc who admitted her was the same ICU doc who took care of her in November. Dr. John Boltax is highly intelligent and has great bedside manner. He involves us in rounds or finds us when we miss them. He is the whole package. He immediately spoke to Julie while we were waiting outside about intubation. He asked her if need be would she liked to be intubated. She nodded yes. Julie and her brother James have always been leary of intubation and James never was intubated toward the end of his life. He had more issues with his heart on top of his CF. Julie on the other hand has changed her stance on it in recent years. She understood it as the last effort to get better. She was so air hungry yesterday that I don't blame her for answering the way she did. He talked to her about being able to suction, and give her a break from the work she was doing to breathe. She obliged. When he sat down with me, we had to talk about how that looked....end of life decisions. He explained that we need to mentally go down that road and talk about what she and I would want now while she had enough ability to weigh in on things. When he asked me and Linda if she would want to be placed into a long term care center, be both quickly said no. He explained that if we get to a week on the ventilator and she hasn't improved enough to come off, the likelihood of her coming off was extremely low given her lung function adn disease state. About two months ago Julie told me she didn't want me to be mad if she let go were she to get really sick like she was in November. All the support we get on social media, and at home has really carried us through a sea of uncertainty and despair. I think it also has it's pressure on her to get better. This can be good in someways, if she can really get better. In other ways, she feels like she is letting me and so many others down if she does not. I explained to her that she has lifted so many people because she has pushed through so much.
Dr. Boltax told Linda and I that he saw a very good chance that Julie would need to be intubated. If she was, we had a 5-7 day window to get her improved enough to come off the vent. He also explained they were going to try and avoid intubation as much as they could. Delaying too much would actually put her at more risk. His hard stops for intubation were her inability to cough up sputum, and PaCO2 levels trending upwards of 90. If we get to those points and we delay intubation too much, it can be difficult to make it through the procedure. She also needs reserves to fight while on the vent. He was very candid about the low likelihood she would come off despite the constant goal to get her off the vent once she was on. I expressed to him my desire to keep her off the vent as much as we could safely do, but that I also was on board with his parameters to put her on.
When she was admitted to ICU that night her PaCO2 was 78. Dr. Boltax made some early adjustments to her BiPAP and she dropped to 74. This is the level of retained CO2 in the blood; Normal is 35-40. It was during this time that Julie was much more interactive. Her dad was able to give her a priesthood blessing by the laying on of hands as described in James 14:16. It was a beautiful blessing. He helped her realize the massive impact she had had on us and so many others, that she had fulfilled so much. That if she is to go that her brother, and grandparents would be so happy to see her and she them. That she would continue to experience her husband and children as they grow. He also helped her see that if she were to be able to make it, that she would be able to have a life that she could enjoy, with her children and husband. This was everything she and we needed to hear. If she goes, it is time, and she will be ready; if she stays, that she will improve and have relief. Shortly after she asked if I would like a blessing. It was so sweet that she was thinking of me, that she had the ability to suggest this. We spent that evening with her interacting with us on a limited but real way. She knew everything she was saying. She was truly there after being so out of it for a few days.
I found myself driving to my parents that night to update my family and extended family, contemplating a funeral, death of my sweet wife, and what life might be like after with the boys she has brought me. I have thought about this throughout my marriage, and certainly more in the last year so I have had time to process it. This time was different though, it was profound. I was moved to tears for one of the first times in a while that this may be her final act. Not because of how it would affect me, but because she is such a stellar person to know and be married to. I was on a 50/50 track. I really had no idea how it would turn out and I still don't. What is wild is the peace I feel with either outcome. Selfishly I want her to stay, but hearing Rick's blessing, helps me see what everyone else sees; this is no way to live. I have always known that and have never wanted to push her to live and be miserable, but I have seen so many incremental improvements and hurdles crossed that it is so easy to believe she will do it again. Like I told my family, I will be surprised if she makes it, and I will be surprised if she doesn't. If she makes it and is happy with her lifestyle, I could do this for 50 more years and not think twice. I am so used to it and so are our kids that I'd do it for her in a heartbeat. The boys were composed, matter of fact, and are young enough that the emotion is limited. No doubt it is affecting them and should she die, they will mourn. But I must say, my boys are handling this so well. They were some of the most composed in the room last night. The conversation I was having was one that we have had hypothetically on a regular basis their whole lives. We have always talked about eternal life, the other side, family members deceased who are helping us, and most importantly the Atonement of Jesus Christ. They understand the reality that because He was resurrected, never to die again in flesh and bone, everyone on earth will live again with a perfectly healthy body. We have always addressed the elephant in the room that sometimes people die young "like mom" and sometimes people die old "like Grandma Mona". They fill in the sentence, they know the plan. To finish, despite the fact that they may grow up without a mom here with them, they will be forever impacted by her, and better men for it. They are stable children because they have had to be. Julie and her love and fight will shape them as it has their first 7 years to handle all kinds of challenges through each stage of their lives. Having these boys was the best decision of our married lives. I am so glad we gave the bird to the odds.
When I came back to sleep in the room with Jules, I felt guilty that I had mentally gone down the road of death. She was responsive. She was asking for cold towels for her feet. She remembered that the nurse had only given her 2 enzyme pills and she needed 3 more. This is a woman who had such high PaCO2 that she shouldn't have been able to do more than just nod yes or no. In a weird way it is hilarious that she is still on top of her care at the end of her rope. She also told one of her friends that she needed 6 units of insulin based on her blood sugar. In the ICU, it is difficult to have control of your blood sugars since they are so risk averse to hypoglycemia. Gotta love Jules.
Sunday night she was still pretty interactive. I helped her get up and go to the bathroom which was good. However because she had a poor nights sleep, she was out from about 6:00 am on. She didn't cough all day. Her PaCO2 from Sunday night went from 74 to 84, 81 in the middle of the night, to 84 during the day. At first glance it looked stable. Dr. Boltax came in late in the day and made some more adjustments to her BiPAP. It was an effort to ventilate her and bring her down. I left to go be with my boys and put them to bed so they could have some normalcy. I was only home for 30-45 min when I got a text that it had gone up to 91. That was it. I knew I'd get a call shortly thereafter to come back. My mom had been home for about 20 minutes and I had to have her come right back to my house. Julie was intubated Monday night at around 8:45. The fellow did it and he was wonderful. Her heart rate and other vitals were very stable. We talked to her beforehand and she nodded that she knew what we were doing.
Shortly after she had the tube, I noticed there wasn't a heater on the vent but an HME. I started to inquire. The company I work for innovated the first humidifiers for medical gasses. This is all we do and is our core business. I knew this is a standard of care and was quickly asking questions. I pulled up the National Institute of Health guidelines for ventilation and confirmed that active humidification should "always" be used in Medical ICU situations. It was a bit intense for a moment. I had one nurse see that I had silenced the IV pump and she poked her head in to tell me not to touch the equipment. I snapped back "I just silenced it. The Toby is done." She replied again and was pretty intense, so I snapped "Go get me a Heater!!" This was the first time I had anxiety. I was composed in asking for a heater for the vent, but when I was confronted on an issue that was so mundane, my apprehension that Julie was getting cold dry gas pumped in and out of her lungs was infuriating. The reason it is so vital to deliver 100% humidity fully saturated 37 degree air is that is the natural condition of the lungs. When you offer any ventilation but invasive nonetheless, you are bypassing the body's natural humidifier in the upper airway. This thickens the secretions and inhibits the body's ability to move them out. It also is a major contributor to Ventilator Associated Pneumonia or VAP. We already have a pneumonia, we don't need more of it. Physiologically, we are very efficient at heating and humidifying air, but not with our head out of a car window. Shortly after the RT brought it in with another ventilator. It wasn't my company's heater, but I didn't care for the time being. I knew it was much better than the HME. He was bothered and I heard him say "Serious, does he think we don't know how to do our jobs?" to our nurse. He was quiet when he came in. I wanted to show my appreciation because I was very relieved they were able to deliver. I had been on the phone with my local rep and he was ready to bring me equipment to use. I thanked the RT and he obliged. I told him I wanted him to pass something along. "I know that was a little intense, and probably annoying that I was harping on this. I am sorry. I just have 7 days to get this right, and I only have one shot at it. I want to give her the best chance to get off the vent and go home. I also want you to pass something along for me. (tears) Julie and I are forever indebted to you and the rest of this respiratory staff. you have carried her through some gnarly times for nearly 2 decades. Please let them know that we are forever grateful for you and for your department. I know we can be annoying and demand a lot when things don't seem right, but don't associate that with us not appreciating what you do. It is a noble profession." He noted that they sometimes have RT's who don't get things right and I cut him off and said, "But the department rally's and gets it right." On his way out he said, "let me tell you something: Don't ever apologize for caring. You did the right thing and you need to keep doing it. I would do the same exact thing if I were in your shoes." It was great that he let me know that. I was in tears that he saw and understood why I was being such a pain. I felt I could sit down and go to sleep...but now I have been typing for an hour or two.
Julie has about a week. Please don't cross that bridge yet. I am on the edge of it, but I won't cross till we have to. Keep praying, and hoping, and accepting what comes. We are forever grateful for even the simple prayers. God Speed.