Good news: He’s holding steady, and the hospitalist says he is actually doing somewhat better than expected. He’s complaining like mad about being held down. He is well enough to be aware of how bad his situation is. His blood sugar count was good. 120 this morning and 112 this evening. He didn’t need an insulin shot. Yeah.
Bad news: The hospitalist anticipates that it will be another two weeks before they can try to drain the liquid from his abdomen surgically. They are waiting for the inflammation to reduce. And, he may still not be able even to eat after they perform the surgery. The hospitalist told me he still only has a 50-60% of survival. Wow! I thought it would be better by now. I just called this evening. Mike’s at it again. He is trying to pull out his nasal cannula. His oxygen level is borderline with it in, 90-91.
This has been one hell of a day. I woke up around 3:30 am. I heard this tick-tick- tick-tick. I hadn’t heard it when I went to bed, so I thought it was someone using the dryer to dry something with a zipper. It wouldn’t stop. I even got up to open the door and check. Heard the noise more clearly, but couldn’t locate it.
Then around 4:30 am, the drumming started, along with what sounded like a shofar being blown, one to start ‘the program’ and somewhere in the middle, three short blasts. (Shofar is a lamb’s horn blown on Jewish high holy days.) I knew they were having a special day today because I was warned that they were not serving breakfast to observe a fast. I could have slept through the drumming, but that ticking was driving me nuts. When I finally did get up, I discovered that that ticking was coming from a wall clock. I hadn’t noticed it at all when I went to sleep, only when I woke up at 3. I asked Govinda, the manager, if he could take it down. When I mentioned the drumming to him, he said that he tried to close all the doors and the windows of the temple so it wouldn’t bother me. I don’t know yet if this is a daily event or not. I think I’ll be okay with it once I get used to it. I think I might even find it comforting.
I called Mike before I left the Ashram. He said, “Get here as soon as you can!” with desperation in his voice. I stayed calm and went about my business, reminding myself that this is a good sign. He is more alert and generally feeling better.
Then I went out to check the car. I was thinking it was just a strip on the side of the car that I damaged last night, easy to replace. Oh, dear. The strip on the passenger side, where I scraped it, is part of a piece that includes the whole front bumper and the entire rear bumper. Then the comparable piece on the driver’s side is an insert, a four-foot piece. Oy vey! It doesn’t look like there is serious structural damage to that piece. It looked like it could be fixed with a paint job. I still have to call the poor Turo guy and let him know and get the process going. It is absolutely astounding how much damage you can do at under 5 mph. I’m the resident expert. Just ask me. I once took out the whole front of my car, rolling up a hill with my foot poise lightly on the brake at a red light into the back of a pickup. Did damage to that guy too. Very impressive!
When I got to the hospital, Mike was groaning and moaning. He was having nightmares that he was being held down. Guess what?! He was. This was not a nightmare. I renamed him Deacon Job.
I asked if they could do surgery to remove the liquid in his abdomen. The hospitalist said that it was unlikely for another two weeks. They were waiting for the inflammation to quiet down. They were concerned if they do surgery too early, he would be in danger of falling victim to bacteria introduced during the procedure. That could be fatal. They determined the degree of inflammation by a weekly CT scan. He had one every Thursday.
He would not be able to eat until the liquid is reduced. He would not be able to have the liquid reduced until the inflammation subsides. Even after the surgery, he may not be able to eat. We’re easily looking at another month here in the hospital, maybe two.
Then he complained of having to pee. I was there as the nurse exposed him. There was blood on his nightgown. It winds up they catheterized him last night. Oh, shit! Like he doesn’t have enough pain. No wonder he was crying, “Tell them to leave me alone.” Now here’s the point. Mike has end-stage Kidney disease. Bad news: He will require some form of dialysis for the rest of his life. Good news: He won’t ever have to get up in the middle of the night to pee again. That’s what the dialysis does. It removes the liquid from his body.
Apparently, they did a sonar gram of his abdomen and discovered that he had 500 ml. of liquid. Some bright person thought it might be in his bladder, despite the reports that he has not peed since he got here. What the hell were they thinking?? The nurse said that he was scanned during the night, they found all that liquid. Then the called the triage team. They told the nurse to catheterize him, without checking his records and saying he had kidney disease. No, no, no. Naturally, they didn’t get much out. What a surprise!
Last night I was thinking Mike would be so much better if he could look out of the window. He’s in a double room. I already asked for the bed by the window. However, because he needs dialysis in the room, he has to be in bed closest to the bathroom. They drain the removed fluids into the sink. However, if he was in a private room, he would have access to the sink and the window. I was thinking they had him in a double for some cost-saving reason. I was prepared to pay for the upgrade.
The charge nurse told me that money was not the consideration. They are juggling several considerations, only two from the perspective of the hospital’s needs: the number of rooms available. They are jammed to the rafters. Second, Mike needs a sitter. If he is in a double, one sitter can take care of two patients. Sitters are a finite quantity. Mike gets one, so he doesn’t hurt himself or pull out those feed lines. Remember, he pulled out the intubation ventilator himself. He had had it.
In terms of Mike’s needs: He has to be close to the nurse’s station so he can be watched at all times. He is considered one of their more critical patients. It was today that the doctor told me he is only up to a 50-60% chance of surviving this experience. Jeez Louise. If they could take him off the heart monitor, he might be able to move further down the hall. But no, they all feel he is one sick puppy and needs to be watched carefully.
Yesterday’s visitors included Sandor and Meaali’inani, both of them are optometrists and good ones. They recommended an ointment to help keep his eyes moist. I pursued today’s nurse to ask her about it. The aide said she was trying to order something for diaper rash, but hadn’t seen her all morning. We’re well into the morning at this point. I said I’ll take care of it. I searched her out. She was a bit startled by me. Then she gets in gear and is most cooperative. I text Sandor and ask for his recommendation so she can order it. I give her the name, and she’s off. Great!
Then one of Mike’s intravenous lines starts beeping. It says there is air in the line. I shut off the beeper (I’m getting good at taking care of things like that around here), and go to find the nurse. She has her back to me and doesn’t hear me. Winds up, she is on the phone with the pharmacist. She’s getting some feedback about her order. They don’t sound too crazy about it. She tells him things, and I make comments behind her to correct what she is saying. She finally says, “The wife will chase me all over the place.” My comment, “She’s got that right!” There’s another nurse at this station who has observed the whole thing. She finally goes up to the nurse and says, “The wife is standing right behind you.” It was all a good laugh. What’s not funny is this nurse responds to threat not to need.
When I came back into the room, I shared the story with the aide. We had a good laugh together. When the aide for the next shift came, we shared the story with her. She first said she didn’t know the woman. Then I described her. She said, “Oh, her. I once had lunch with her, and she tried to convince me not to go into nursing because it was a terrible job.” Sounds like this lady. Her whole demeanor said, “I DON’T WANT TO BE HERE!”
When it came time to turn Mike, the aide didn’t even bother calling his nurse. She asked this fantastic nurse, Lucy, who was taking care of Mike’s roommate to help her. Lucy is someone who saw me walking down the hall one day and asked if I was okay. When I explained the situation, she asked if she could do anything. I asked for a hug and got a great one. It was still with me. There are so many genuinely caring people here. There are one or two not so great ones, but no outright bad apples.
The best aides have sat transfixed to the patient, watching every minute. Mae was like that. Then there was Rachael. She thought to put on soothing music and put some Lavender scent near him to comfort him. Lavender is one of the essential oils I wear. I had it with me. We doused a cloth with it and put it near him. Then there was Liam. He was the worst, even that is not absolutely terrible.
We had Liam before Mike went up to the ICU. I was sleeping on the cot in Mike’s room at the time. We were both trying to sleep, but there was this racket out in the hallway, people talking and laughing loudly. I called Liam’s name but got no response. Figured he went to the bathroom or something. I finally got up and walked out into the hallway. He was one of the people out there talking loudly and laughing. I actually had to ask him to keep it down. Don’t think I would describe him as being on the ball.
Today’s aide just went to change Mike again. He is still bleeding a little from the butcher job they did on him last night. Grrrrr!
Today I called Genworth, our long-term care insurer. Good news: we have excellent coverage, covering nursing care, aides, and even chore services and adult daycare.
Bad news: They don’t cover home hemodialysis. I think Mike is going to need this. This means he has to stay in Honolulu until he can be transported to the dialysis center from our home. I think there is another center in Kona. I’m hoping they do provide it. I have to investigate how much they charge.
He had been scheduled for PD surgery, which is a different type of dialysis that can easily be done at home. He was still a candidate, but it will probably be a year before his abdominal area is sufficiently healed to do something like that.
It’s three in the afternoon, and I still haven’t screwed my courage to the sticking point to contact poor Keven, my Turo host. Oh, boy.
Two technical problems to add to my troubles: One, the WIFI service at the hospital sucks. Two, something went wrong with my formatting in Word. I finally found a young man under thirty who could help me. He didn’t solve the whole problem, but well enough so I can function.
I left shortly after 5 pm. Before I did, Mike was saying, “What a waste of time!” He would love to do his usual work. I told him it won’t be a waste of time if you use it to learn and deepen your spiritual practice. Mike’s involvement with Catholicism is primarily intellectual, except for his spiritually well-developed heart. Through his relationship with the church, he has become a truly loving man. Mike has always been a moral man, and he has always loved me, but he didn’t have much patience for others. This has changed dramatically over the years. I think he believes deeply, but he doesn’t have a well-developed spiritual life in an almost corporeal sense. I have been teaching him what I know and been encouraging him to dialogue directly with Christ. If anyone here on Oahu would like to help him in this matter, it would be much appreciated.
This evening, rather than a crowd for dinner at the Ashram, I was all alone in the dining room. It seems that Sunday is a feast day for the temple, and all the members come to share a meal and celebrate together.
As I sat there typing, I heard the drums banging downstairs and the members singing along.
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