Good news: Stable. Able to breathe spontaneously for a short time while still intubated.
Bad news: Stable, no real positive changes.
ˆ Before I say anything else, thank you to all of you who have sent cards.
The bed in the ashram was reasonably good. My back wasn’t worse for sleeping on it, and lying down relieved the pain. I woke up around 8 am and spent some time rolling around on a tennis ball to help my back. I discovered that I got more relief applying the ball to the right side of my spine even though the pain is on the left side. When I was up, showered, and dressed, I had breakfast out on the grounds of the ashram. Very relaxing. Then I went to the hospital just to have some contact with Mike. I don’t know if this is true, but I believe his circadian rhythms are set to my coming and going. I get there in the morning between 9:30 and 10:00 and leave around 6:30pm. I am his clock.
I had called the hospital at 8:30 am, right after the shift change was complete, to see how Mike was. They told me stable. The story was a little more complicated when I got there. They had tried to reduce his dependence on the ventilator. They can set the ventilator to breathe for the patient, or they can let the patient breathe on their own with the tube still down their throats. They made a spontaneous breathing test. He did reasonably well, and so they tried to leave him to breathe on his own. His breathing became very rapid, and they had to put him back on supported breathing. When he was in the ICU before, he actually pulled the intubating tube out on his own. Apparently, this is not uncommon. It has to be a pretty uncomfortable feeling. Fortunately, he had been breathing on his own with the tube in, and they were planning to take it out the next day if he continued doing well. Since he was able to breathe on his own, they left it out. Who knew it could be so complicated?
While I was there a respiratory therapist in training, this adorable young woman, Augustine, came in to work with Mike. She was the one wrestling with adjusting his breathing apparatus.
The ICU doctor came in too, Dr. L., who I don’t think likes to deal with relatives of patients. I asked him if he knew if the second tube draining his abdomen was, in fact, successfully removing anything from his pancreatic sack. I wondered if there were any amyloids in the liquid. He corrected me with an obvious distaste for my ignorance. Apparently, the much sought-after material is an amylaid, not an amyloid, if I have it correctly yet. Arrogance is very difficult for me. I thought they could just pull fluid from the drain bag and test it. He suggested it would be a more invasive procedure than that. He also thought I was telling him what to do instead of asking him for information. This guy has a few problems.
He then proceeded to tell me that Mike was a very sick man with a very difficult to treat disease and left me with the impression that there wasn’t much to hope for. While I am aware of the possibilities, it still hits me hard every time I hear a doctor say it outright. This wasn’t a man who has a lot of patience with unhappy family members.
It is absolutely true that there is not much they can do for him other than keep him alive and make him as comfortable as possible with some hope that his body will do what it has to do. They avoid aggressive steps because each one has its own risks. But to not take those risks creates another set of risks. Again, Tom’s story about his battle with pancreatitis gives me some hope. Without it, I don’t think I could have any. Mike is one sick puppy.
We were told that the only risk factors for pancreatitis were: alcohol consumption, high triglycerides, and a traumatic injury. Mike had none of those factors. They were thinking that it was one of the drugs he had been taking, which sometimes causes it on an off chance. Tom’s was trigger by gallbladder surgery; he had a gall stone. This could be considered a traumatic injury, even if it was medically advised. Dorothy found that the various treatments of kidney disease also can cause this problem. The PD (peritoneal dialysis) has a higher chance of causing pancreatitis than HD (hemodialysis dialysis) does. Mike has been on HD since November. The one thing we can be grateful for is that he is no longer using the fistula to receive dialysis. This came about because the last donor had to drop out. Mike was about to go on a week-long trip to the mainland and Oahu when I learned this, and I didn’t tell him before he left. Instead, I went to work on alternatives. The PD was too far away; the doctor recommended that he have an HD port installed immediately. If he was still wrestling with the fistula for an entry for the HD needles, I don’t think he would even want to live. Apparently, his veins are too small to make this a viable option. Every time they tried to do the dialysis, he was in terrible pain. I didn’t even realize how much until the day he came back from dialysis, having used his new port. What a difference!
I left the hospital, I went to the Ala Moana Mall to meet the gang, Damon, Cylin, August, Jean, and Dorothy. Holy cow! It’s the largest mall I’ve even see. The mall parking lot rival airport parking facilities. And it has some of the fanciest stores I’ve ever seen and some I’ve never heard of. It’s like walking down 5th Ave. in Manhattan. Dorothy commented, “crazy rich Asians.” I think that’s their desired clientele.
Damon and August were wrestling with my broken phone. They had initially wanted me to buy a new one. I remembered that I had Mike’s with me. He wasn’t going to need it immediately, so I charged it the night before and brought it in. I met everyone at the Apple Store. August did all the work. He exchanged the sim cards. Only one problem: I couldn’t download all my information to his phone because I don’t know Mike’s password. Not only is he not in a position for me to ask, he probably wouldn’t remember it anyway. I can’t remember my passwords from one minute to the next. It might be a good idea for all of us to have a record of our passwords in our regularly updated wills.
While Damon and August worked on my phone and Jean’s Powerbook, Dorothy, Jean, and I went shopping. Jean needed a bathing suit and a light sweater for the freezing cold of the hospital. I wear at least one sweatshirt and sometimes two and a scarf to keep warm. Mike’s room in the ICU has one wall of windows, and the sun does a nice job warming part of the room.
Dorothy bought bananas for her and me, and I bought some wipes to clean my glasses. I do need some other stuff, Dove soap and, of course, more Hersey Milk Chocolate with whole almonds. Although, I find my appetite is so repressed that I can’t finish an entire bar in one sitting right now. I’m sure things will improve with time.
In preparation for Mike’s sister’s, Randy, arrival, to give her time with him alone without me around, I went with Dorothy to show her the ashram. It is lovely and peaceful there. The community has created a spiritual space. Also, there is this huge banyan tree on the property. Dorothy took a picture of me in front of it and had me take one of her. The main house was originally a mansion. I was told it was built by a Japanese family. I suspect they were Buddhists and planted this tree because it is under this type of tree Buddha is said to have attained enlightenment. I tried to Google banyan tree-Buddha (also called a Bodhi tree), so you could get some idea of what it looks like, but I couldn’t find a single image that would give you an idea of how this particular one looks. The one at the ashram is much larger and broader than any I saw on the Internet. When Dorothy was standing under it, it dwarfed her.
Govinda, the manager, came by as we were sitting in the garden. I said, “Guess who this is?” pointing to my sister. We are sometimes taken for twins, although we don’t share a single feature. We left from there to go back to the hospital. Dorothy and I sat quietly, me typing up Friday’s log and her playing a game on her phone, or the two of us occasionally talking quietly. It was delightful. I hope the vibes we were creating were also pleasant for Mike. He likes it when I’m comfortable and happy.
Damon texted us and told us to be at the hotel around 7:30 pm. Dorothy and I left the hospital around 6:45. When we got to the mall parking garage, we both discovered that neither of us had properly noted where we were parked because we were talking. We started on the 3rd floor with no luck. We finally found the car on the fourth floor.
The trip to the hotel went smoothly; I was able to drive a lot faster than 9 mph. I had some trouble with the Pay and Park parking box. I wound up paying twice. Okay, it was a mere $8 total.
This was the first time I would see Randy, Mike’s sister, in a long time. We have some interpersonal difficulties, and I’m not very comfortable with her. We all ate together around a round table. Randy and I made a point of not sitting together. Unfortunately, her presence still wore on me. My back was killing me throughout the whole meal. I’m sure there were other factors as well: couldn’t find my Tylenol, and the chair wasn’t ideally suited for my back problem. I went home around 9:30. Damon and Jean walked me to my car. There was stuff in the back that Cylin had left that she had bought that day. She needed a pair of shorts for August. She had packed for him on Thursday while he was at school, and she forgot to pack shorts for a trip to Hawaii. Fortunately, she didn’t forget his bathing suit. The Prince Waikiki Hotel has a great swimming pool.
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