Good news: He is breathing on his own but while intubate in preparation for extubation. He is maintaining his breathing and a reasonable oxygen rate.
Bad news: No one is very optimistic about his surviving this hospitalization, or maybe we can say they're only very conservatively optimistic.
I woke up before 8 but just lay in bed. Sometime in the morning, the rain started. I thought, "Oh, sh_t! I left my umbrella in the car. I'll be soaking wet by the time I get to the hospital, and it's freezing cold there." I decided to wear yesterday's clothes, except for underwear for my run to the car, and have a change of clothes in a shopping bag. Then I could change when I got to the hospital.
I left the ashram about 9:30am, planning to have breakfast at the hospital. They have a darn good cafeteria food, and it's cheap, well inexpensive. I think some folks come here to eat that have nothing to do with the hospital. There are two old men who I see regularly. Good thinking.
When I got to the parking lot, there were only 33 spaces left. I knew that meant that it would take time to find a parking space. I usually go down to the 4th or 5th floor, but today I was part of a caravan of cars looking for a parking space. The caravan came to a halt as someone pulled out of a parking space, and we all had to wait until the space was free and the car at the head of the line went in.
When we got to the 5th floor, one of the attendants saw me coming, waved to me, and opened a held space. What's that about? The attendants sit at a table on the 5th floor because that's where the hospital personnel park. The attendants are there to approve their parking tickets. When I first started using the parking lot and noticed cones blocking parking spaces, I wondered what that was about. I finally asked. They said, "We're saving it for our customers." What that exactly means, I'm not sure. Who isn't a customer? They told me just to ask, and they would move a cone for me. This morning, as I pulled up to their table after 3 other cars had passed the attendants, one of them ran out, waved to me, and opened a spot. I was just grateful that I had a spot and was too tired and lazy to question the ethics of my advantage.
Then there was the rush to get to the cafeteria before it closed at 10 am. There was something wrong with the elevators. One was definitely out of commission; they were working on it. The other four were stuck on the floors. I only had seconds left. I ran up a flight of stairs, slid onto the cafeteria line just before they closed the final door.
There were no more scrambled eggs left in the bin. I ordered one egg over easy, copying what one of the other customers asked for. I grabbed my two pieces of whole wheat bread for toasting, some butter, and a glass of orange juice, and went back to get my egg. I've never ordered anything easy over. It was a somewhat runny egg. I still don't know if that's what easy over means. I'm 78 and learn something new that some 6-year-old already knows.
I went down to Mike's room and spoke to the nurse. Dwayne was no longer on. He had his four days off, and Joyce was his nurse. They told me that he was still on the ventilator but doing okay. It was a dialysis day. One of his favorite things to do, not. But, absolutely necessary if he is going to survive.
At 11 am, Damon, and I had a conference with the Palliative care team, a doctor, a nurse, a doctor in resident, and a social worker. Damon was in LA, so this was all done on a conference call. Damon's first question, which he had already asked the ICU doctor, was, are they keeping him alive for him or for us. He made it clear that we don't want them to keep him alive for us. Later on, in the conference, someone in the team thanked us for holding this position. Apparently, there are many people who want to keep their loved ones alive regardless, for years and years and years. They're just warehouse on life support. No one in this family feels that way. This is a highly functional man who had a full life until this pancreatitis attack. I'm interested in seeing some changes in his personality, a deepening of his spiritual life, but not if there's nothing for him to look forward to.
We learned that there was a small spike in his white blood count. Apparently, this is a result of the after-effects of pneumonia. His lungs seem to be clear, but the pleural sacks are still draining fluid. I don't know how serious this is. If he has a bad infection, I think we can pretty much give in. His body can't take much more.
Damon asked questions about how to deal with the end-stage I hadn't even thought of. He asked about hospice care. The team asked us at what point are we prepared to let him go. This means how long a period of time during which there is no improvement and his condition continues worsen. Damon and I both said, "Two weeks." One week seemed too short and three weeks seemed too long. Damon and I are frequently on the same page.
It gives Mike comfort that Damon and I are working together. I think Mike's afraid of my decisions because I'm more into alternative medicine than he is. He's learned to keep his mouth shut if I seem to be doing all right with my approach. This has been the one big ideological difference we have: what resources to use when there is a physical problem. We have been known to shout at each other around medical decisions.
The other question the team asked us is what to do if his heart fails. I had my answer, which was to do everything. Damon spoke first, "He said to let him go. He came in with a strong heart. If it fails, it means the rest of the body is so compromised, the heart cannot serve effectively anymore." I hadn't thought of those implications of a heart attack. When I heard his thinking, I agreed with him.
The team asked us who Mike was before this pancreatitis attack. We told him all he was involved with: serving as a deacon at St. Michael's, which involved doing masses on weekends, and going to various meetings, teaching two bibles study classes a week, serving as the spiritual director for the diaconate problem, which means traveling to Oahu once a month for a weekend and going to San Francisco once a month for three days to participate in spiritual direction training to get a certificate, and being the president of the board of directors for west Hawaii's Habitat for Humanity. Not to mention, cooking every night, paying attention to me, loving our dog Elsa to death, and exercising. He has grown into a wonderful all-around guy. I'm proud as punch of him, and I absolutely adore him.
His greatest gift to me is that he allows me to love him. This is a gift I also give him. There are some people for whom loving and being loved represents a power struggle. Mike and I don't do that. Many years ago, many, many years ago, I was in a loving mood, and Mike felt he wasn't; he had the only appropriate response I can think of. He said, "I'm so jealous!" Whoever feels the most loving is the winner in our relationship.
I was taught a complete contradiction to that attitude by my parents. I father had a joke: "How is a man's love like a glove. The only way to keep it is not to give it back." He was actually telling me that to keep a man's love, make sure I never let him know I love him or never actually love him in kind. What an awful way to live.
When I got back to the ICU ward, I ran into the doctor on duty for that time. It had been made clear to us that the surgical team would not operate on him because he was too weak to survive. The purpose of the surgery would clean out all the dead pancreatic tissue. There is another, less invasive way to do this, but it also has its risks. Dr. Izawa, the doctor who is the primary deciding physician on Mike's case, had told us that they hadn't been able to get a tube directly into the pancreatic sack. Mike's pancreatic sack is kind of hiding behind his spleen, making it hard to get to without doing damage. They had tried an alternative approach of putting in a second abdominal tube, hoping that it would be contiguous with the pancreatic sack and help drain it. I have had no information on the effectiveness of this second drain one way or another. Dr. Izawa is away at a conference right now. Still, he had said that different radiologists, the ones who placed the drain while looking at images of Mike's insides, have different levels of skill and willingness to take risks. I said I wanted to wait until Izawa gets back before we try anything else that may be risky. Also, it is Izawa that is enthusiastic about trying this. I don't want someone who is lukewarm just doing something I suggest. Bad mojo. I also have to discuss this plan with Damon, and, of course, with Izawa, when he gets back.
When I got back to the room, Mike was up and responsive. Joyce had lowered his Propofol so his blood pressure could stay up during the dialysis. Dialysis lowers blood pressure, and so do sedatives. He was into banging his arm, which signals he wanted something. I asked him the usual questions, and then I asked, "Do you want to die, to end this suffering?" He signaled, yes. I told him, "Not yet." Not as long as there is hope you can live and have a decent life. I told him that Tom's recovery, the fellow who had severe pancreatitis like Mike, took 5 months. I told him that Damon and I, and Jean, just had a conference with the palliative team about this exact subject. We will never allow him to go on like this forever. But, as long as there is hope, we want to work for his survival. I assured him that Damon and I are making this decision together. In fact, if Mike can be sufficiently conscious, he can help make that decision.
I was going on giving him as much information as I could. He made a circling gesture with his hand. It's the gesture he makes when he feels I'm rambling on about something he's not interested in, and he wants me to stop. He calls this bibble babble. I said, "Bibble babble?" He nodded yes. "You want me to shut up?" He nodded yes. There were two men in the room at the time, a deacon in training, Marlo, who visits once a week, and the respiratory therapist, who was watching to see how well Mike was breathing on his own without the ventilator. They laughed, and I could see a mischievous smile on Mike's face. It was small, but I know that look. Loved it! I was never so happy to be told to shut up in my life.
Then he started banging again. As well as I could make out, he was complaining that he wanted to pee. This constant sense of urgency sounds horrible to me. Earlier, when Mike had signaled his need to pee, I asked the nurse. She said he had a Foley catheter in. I had remembered Dwayne saying he took it out. I let it pass the first time, but when Mike continued to complain, I chased Joyce down, told her what Dwayne had said, and asked her if she was sure he was catheterized. She said, "Yes, I peeked." Well, that pretty much put a cap on my questions. I was also told that the Foley leaves you feeling like you always want to pee. What I nightmare! I had to go back and tell Mike that there was nothing I could do. He was going to have to find some way to put his mind on something else.
I don't know if I got what he said next right, but it seemed to me that he wanted to hear some lecture on Catholicism. At that point, Nurse Joyce came in and said that a team of people would need an hour alone with him to clean him up, massage him, change some bandages, and turn him. I decided to head to the ashram to pick up his Powerbook. In passing, I asked Joyce if she could shave him. She asked if I meant with an electric razor. Yes. So, that would be good, too.
I drove a very tired Jean back to the hotel. Then I went to the ashram to pick the items up. When I got back to the hospital, Mike was out of it again. They had upped his Propofol and knocked him out. Joyce had asked him if he wanted to go back to sleep again, he had said yes.
After they finished cleaning him, Dorothy and I went back into his room. She sat knitting and listening to an audiobook on her phone. Mike was asleep. I sat and wrote a good part of this log. Then it was 6:30 and time to go.
Dorothy had checked out of the 5-star hotel with plans of sleeping in the cabin with me tonight and tomorrow night before she returns to the east coast. We had dinner at the ashram. She was delighted with the food, particularly the dessert, a triple berry concoction made with farina. Our mom used to make a farina pudding with a raspberry sauce. We both remember it with joy.
