They have been withdrawing him from blood pressure medications, called vasopressors, to RAISE his blood pressure; he has been holding on.
No fever. His vitals are pretty stable. There is a good possibility that the outright destruction of his pancreas has stopped.
Bad news: They couldn't get him to breathe on his own. He became too anxious. This is not uncommon. Nobody says, "Yay! Please, intubate me. "It's a pretty unpleasant feeling.
This is the second day when there is an increase in his white blood cell count. This suggests an infection somewhere in his system.
I mentioned the great meal Dorothy, and I had at the ashram, but I forgot to mention that I scraped the left bottom of the car on a set of low border defining rocks the way I scraped the bottom edge of the right side of the car. How fast was I going? Very, very, very slowly. It was dark. I couldn't see the rocks. I missed the tree. That's pretty good
Dorothy and I slept in the cabin together. She took the single bed, and I continued in the double. We both slept well. I think I slept particularly well remembering Mike's telling me to cut the bibble-babble and smiling impishly when the men in the room laughed. Never been happier to be told to shut up.
Dorothy was delighted to be sleeping in the environment of the ashram for free instead of the fancy hotel that cost $250 a night because of some deal Damon finagled, and usually costs about $300 a night. The 'room' is a free-standing cabin with two beds, a bathroom, a small kitchenette, and a desk. This room includes free meals for Dorothy and me.. Dorothy was complaining that she had had an omelet every morning at the hotel. At the ashram, she had delicious oatmeal, and some foods she had never had before. They only cook Asian Indian food here, and they cook it well.
Our first job was going to a UPS store to get rid of a brace of socks I bought from Amazon for Mike to keep his feet warm. They didn't sell a single pair, I had to buy six. The brace of six came to about 1 foot by 8 inches. Really? All seemed a little overkill. The UPS was nearer to the hospital than to the ashram. You would think that there would be UPS stores all over Honolulu, but no. When we found it, it was in a Navy PX.
I needed some code from Amazon to complete the mailing. Because my phone broke, and August placed my sim card in Mike's phone, I didn't have access to my email on the phone I was using. The UPS store didn't have free Wi-Fi. Dorothy and I had to go to a food court in the PX to get the Amazon code to give to the UPS folks. I took a shot of it on my phone, and we returned to the store. It took all of two minutes once we had the necessary information. Then off to the hospital, which was a mere 7 minutes away.
When we arrived at the hospital, the parking lot only had 3 spaces left. I let Dorothy out before I turned into the lot so she could go up and be with Mike. Jean had already arrived. She was going to spend the day there until she had to leave for the airport for her return flight home to the NJ. I came around a bend to find a car just pulling out on the 4th level. I parked and went upstairs to join them.
I knew already that they had tried to take Mike off the ventilator to get him breathing on his own in anticipation of extubating him, finally getting that tube out of his throat. But that didn't work. He became too anxious. Not an uncommon reaction. They put him back on support and increased the Fentanyl so he could be comfortable.
I had called to make an appointment with a doctor in a clinic for myself today. I have a bad back that hurts with any up/down motion, but other than that, it's only mildly annoying. I'm not sure if it is due to injured soft tissue, or if I've done something to one of my spinal disks. Also, I have been running high blood pressure.
I discovered the high blood pressure that last time the family came to Hawaii in response to Mike's first trip to the ICU. Jean and I shared a room and she had a blood pressure gadget to monitor her own blood pressure. I did mine on a lark and was rather appalled by the result. 160/95. I called my primary care physician in Kona immediately and asked her to prescribe medication. She was able to order it so I could pick it up here in the hospital, since she is part of the Kaiser system. I started with one pill a day. I also bought a blood pressure monitor for myself, and was observing that my blood pressure seemed to love those high numbers. I contacted my doctor again, and she recommended that start on two pills a day. The assumption is that I have higher blood pressure because of my current circumstances, and we can drop the medication once my life levels off. But, my blood pressure is not responding to the medication. It's not going much higher, but it sure isn't coming down. The doctor I saw today recommended that I increase the dosage again. The clinic was only 7 minutes from the hospital, easy to get to. Although not understanding the parking lot, I wound up parking in the staff lot instead of the patient one.
I had made my appointment in the morning before I left the ashram. When I got to the hospital, they told me they would take him down for a CT scan. Scheduled around the same time as my doctor's appointment. Perfect. We would both be out around the same time.
I thought I would have a long wait at the clinic, but there was no one waiting to see a doctor. I was in and out pretty quickly. The doctor tested my leg strength to get some idea of what was going on with my back. I came out hunky-dory, strong legs. I told her I wanted an X-ray to check there was no spinal damage, like a ruptured disk. She ordered that. I went down to get the X-ray. There was a lovely surprise in the X-ray area, a hand-painted wall with scenes from Hawaii. But, this wall didn't look like the usual art commissioned by Kaiser. When I commented on it, the X-ray tech said he had painted it in his free time. The wall would come down. It was up to hide construction on the other side.
After an hour and a half, the technician also allowed me to see the X-rays. I'm not an expert, at least not yet, but I didn't see anything that looked bad. That was a relief. However, maybe there may be a nasty surprise in store. The next step may be to get to a chiropractor, but I'm not sure. Don't want one that is just going to look at my spine and not my soft tissue.
When I got back to the hospital, Jean had already caught the shuttle to the airport to catch her plane. We had said good-bye before I left, anticipating that I wouldn't be back in time. This just leaves Dorothy and me of the family group. I will miss the company. Not just for myself, but because I think Mike enjoys listening to our conversations.
Mike had a visitor today, Will from the diaconate program. He has apparently visited several times. He was great company. Dorothy, Will, and I had conversed about many things. I believe Mike enjoys hearing conversations. Will's contributions were particularly interesting. He was telling us that the Polynesians discovered every inhabitable island in the Pacific Ocean. How in God's name did they do that? Take a look at your map. The Hawaiian Islands are small dots in the middle of this great body of water. In retrospect, I don't think Will and Dorothy were standing close enough for Mike to hear them. I think the people holding the conversation should be sitting on either side of Mike's bed so he could hear. The nurses always deal with people as if they can hear, no matter what state they are in. They tell him what they are about to do. "I'm going to take some blood from your middle finger," while holding his targeted hand. "Now, you'll feel a small prick."
While Will and Dorothy were talking, the nurse allowed me to look at the results of the CAT scan Mike had. That's where I read the report that the pancreas may have done its worst. Mike's case is so severe, they calculated it would be a least three weeks before they could be even a possibility that the pancreas had done its worst, and the attack wouldn't kick back in and do more destruction. So, after 5 weeks, this is very good news. Even better, there seems to be some pancreas left. I'm not sure how much.
I have had some conversations with Mike, I believe he has been saying he wants to die, but I'm not sure. My response has been, "Not yet, not while there is a chance you can have a life after this disease." But I assure him that if there is no chance recovery, Damon and I are in complete agreement about letting him go.
Some have asked if Mike really wants to die. I don't know. I do know that there have been times when I have been violently nauseous, I have wanted to die. Mike is clearly suffering. He wants his suffering to end. I can appreciate that he can't see an end to it at this point; it's gone on forever. If it weren't for our information from Tom, I doubt any of us in the family would be able to contemplate an end to it. How could a situation that has gone on so long get better? This is a question we continue to ask. It's hard.
Because I am concerned that Mike cannot envision a full recovery, and feels he would not want to live a half-life, I called someone who I thought would be an expert on end of life issues for the Catholic Church. I had two questions: first, it is part of Catholic doctrine to allow someone to die by denying life support. The answer is, yes. You are not required to use extreme measures to save a life. The second question was: if Mike survives and decides after one or two years that the life he is living is not worth it for him, can he refuse dialysis and allow himself to die from end-stage kidney disease. The answer to this was also, yes. I told this to Mike. I am hoping it will give him the courage to face what he has to go through, which is a tremendous ordeal. I have told him that he is truly suffering a misery. However, tough noogies. I will not pull the plug; neither Damon nor I will pull the plug until it is clear that there is no more hope. Again, I thank God every day that I learned Vipassana meditation techniques. It has taught me how to sit with the pain of others without suffering from sympathetic pain. I could never do what I am doing if I didn't have this skill. Never.
Some people are writing that what I am doing is amazing. I think that many of you would and will do something comparable in your lifetime, or already have. I hear stories from you taking care of family members that are ill, and I am amazed. Yvette's mother-in-law took care of her aging parents. Her mother had Alzheimer's. I was a very difficult situation, but she always handled it with grace and compassion. I wanted her to write about her experiences so she could help others in a similar situation. She didn't do that. I'm writing about mine, minute by minute. I am documenting what I'm going through. And, the act of documenting it is making this whole process easier for me. That I have people out there reading it affords me some, I don't know what, satisfaction? distraction? comfort? pride? pleasure? All I can tell you is that it feels good that people are interested, learn from what I write and many are actually enjoying it. It does a lot to , , , I don't know what, but I do know that it makes this experience easier for me. Thank you.
Dorothy and I left the hospital at the usual 6:30 pm, went to the ashram for dinner. Dorothy was again enthralled with the food. She bought a cookbook. She asked people how they made certain dishes, what spices are included, etc. Me, not so much. I eat the food, enjoy it more with each passing day as my palate becomes more familiar with the tastes,- but cook it? I don't think so. I don't cook. Mike has been my cook all these years. He loves to cook, and I love to wash dishes. It is a match made in heaven.
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