Tuesday, February 12, 2019

Good news: No changes for the worse.

Bad news: None

    Mike had dialysis today. That knocked him out even when he was healthier.  You can imagine how it leaves him now.  And he is going to have it more often this week.

    The worst is that he is moaning a lot.  I always ask him if he's just complaining or if there's something I can do for him.  He mostly says he's just complaining.  I think that sounds reasonable.  I say go for it.   I am very grateful for my training, learning to just sit with my own pain and that of others without reacting.  In the past, every moan would have gone through my body like an electric shock. 

    Those who have gone to the movies with me are probably surprised by my tolerance.  I am well-known for running out of the theater/room whenever someone's about to get hurt, or one of the characters is mean. It's hard to explain to people. However, what happens in the movies is usually about something that humans are doing to other humans. Man's inhumanity deeply frightens me.  I have no trouble with individual pain, particularly when not caused by another person, even death. I haven't had a problem since I was a child.  I was good at the bedsides of my dying grandparents. Go figure!  

    As a young adult, I read a short story by Tolstoy, I believe. It's a story about a dying man. He's whole family skirts around the issue of his condition.  He has a male caretaker that speaks to him honestly, and this relieves him. That's what I try to give Mike.  I tell him his condition is a terrible one, and he has a right to complain.  I also tell him he's in a crash spiritual development course. He's doing his forty days and forty nights in the desert. That puts him in the ranks of the best of them.  Although I think Moses, Buddha, and Christ chose to go into the desert.  I don't think Mike did. But then again, neither did Job, and it all worked out okay for him.  I think I have some Panglossian faith that it will all work out for the best in the best of all possible worlds.  I may be naïve, but it keeps me afloat. Hopefully, it will do something for Mike as well.

    I have asked him if he's dialoguing with Christ.  He said no.  I don't know why.  I don't know if he knows why. 

    Nothing much new for the rest of the day.  Yeah! Just events, but no change in Mike. He's just moaning.  At one point, he started sweating.  I called for someone to take his temperature.  It was as normal as normal can be.  

    A new nurse came on shift.  Funny, the young ones are really on the ball and interested in doing a good job. Most of them are in their thirties.  

    I just learned about millennialism last week: the problem millennials have with accepting that they can't have everything the way they want it. I have heard some remarkable stories from Damon and Shivani, who have had the job of supervising them.  But no; here it is the 50-year-olds who do as little as possible.  Everyone else is concerned and on the ball. I hadn't seen anyone all day except for the dialysis nurse.  The regular nurse came in once because some machine or other was beeping its head off.  She was defensive about what she was doing. Really?!  Not a good sign.  

    When the shift change occurred, the new nurse said he would be checked on regularly as he had been today.  I said no one ever came in to check him. She gave me a look.  I realized he hadn't been turned since he finished dialysis.  That means he was in one position for 6 hours.  Ow!  I saw on the board that when he was moved, someone change the note on the wipe board from "turn every 2 hours' to 'turns in bed.' He can barely raise an arm. He hasn't had any calories for over two weeks, three this coming Thursday.  Where would he get the energy to do that?  I tried to get him to press the call button for the nurse.  He was barely able to press the button.  I assured the new nurse that as long as I was here during the day, I was happy to do the job.  But, please pay extra care at night when I am not here.

    He asked to speak to Damon around 3 pm. They were on the phone for quite a while.  Damon was impressed by his responses.  When Damon was here, Mike was seriously out of it.  But, let us remember, he was in the ICU, intubated, and on Fentanyl.  Those factors might have had something to do with it. 

    The Wi-Fi was much better at the hospital today.  I think it was the bad wind storms we had that interfered with the system.  FYI:  It was so cold in Hawaii the other day, that Maui had snow on its mountain for the first time in recorded history. Today was sufficiently relaxed that I started playing Free Cell again for the first time since I arrived.  Maybe soon, I'll have nothing of note left to say. Gee.  Someone mentioned that this would make a good blog.  Have no idea how to locate one, no less post one.  Thought if I have enough viewers, a sponsor would pick me up, and that would cover my car repair costs.  

    I set out to leave around 5 pm but got delayed.  Mike was sweating and asked to be bathed.  I was able to wet a cloth and pat him down.   Then he asked, "Why is this happening to me?" I reminded him of Job's story. He was a good and honorable man, just like Mike, and terrible things happened to him.  I told him I had to go.  He said, "Don't go. I'm so alone." I reminded him that he is never alone.   I told him to ask Christ that question.  He was finally able to do that.  I asked, "Did he give you an answer?" He said, "No." Do you feel his love? "Yes!" I reminded him that there were many, many people praying for him, not only here in Hawaii, but in Ohio and New Jersey as well.  I told him to focus on those praying for him.  He was able to do that for a little bit. I don't know if it is going to continue for the rest of the night.

    I reminded him that I would be back in the flesh the next day.  I was not planning to leave for the Big Island until he was better, or I had to get my taxes done.  After that, I would come back. 

    I spoke to the nurse on duty, who seemed better than the day nurse by a country mile.  I told her that he wasn't physically able to push any of the call buttons, and if he called, "Nurse!" it might be confused with his other groans. She said that she and two other people would make it a point to check on him regularly during the night.  That means I can sleep peacefully and not worry about him.  My worry would not be about his physical health; he's got every kind of monitor on him known to man.  I would worry about his physical and psychological comfort.

Tuesday, February 12, 2019

 Good news:  He is in a private room with a fantastic view (for me), and Mike can finally see the cycle of light and dark provided by nature instead of artificial light, which is on all the time.

-he is complaining and asking when they will do something. Good sign because he feels well enough to complain. His coloring is better; his white blood count is better; his abdomen is a little less distended, which means he may be draining some of the fluids himself.  He wasn't on the bi-pap last night. He is still on just the nasal cannula with a 40% boost from the ventilator. Maintained his breathing from yesterday. Blood sugar count this morning: 86.  Fantastic! Maybe there is some hope enough of his pancreas is working to prevent diabetes.

Bad news:  I don't have anything to report today.

   

    I had a bad, bad night's sleep. No, it was not because of the banging around in the Ashram, it was because of guilt. I have been doing so well dealing with his suffering.  All the healing I've done on other people and my Buddhist Vipassana training have helped me not actually to suffer with him, sympathy, while still understanding his suffering, empathy, and doing what I can to help relieve it, compassion.  But then they catheterized him!  That was in error.  He has end-stage kidney disease, and the fluid in his abdomen is explained by his pancreatitis.  The night they did this, I called, and he said, "Tell them to leave me alone!" I didn't think to ask what they were doing to him; I just assumed it was the usual annoying stuff that happens when you're in a hospital.  I could have stopped it if I had been there.  Do I understand that my guilt and self-flagellation does no one any good?  Quite to the contrary, it was denying me a good night's sleep, which was going to make me useless after a while. I tried all the tricks I know to relieve myself of this burden; EFT, healing, visualizations that I use with others.  Nothing works.  I was going to call a therapist who I believe can help me. 

    I wasn't feeling hunky dory this morning to start out with.  Then I called and asked for room 318A.  The operator connected me.  An aide answered.  I said I wanted to talk to my husband. A cheery, upbeat, clear voice answered.  It didn't sound quite like Mike, but he has been having problems articulating clearly for any number of reasons: takes too much energy, doesn't have the breath he needs, and the nasal cannula is pressing down on his upper lip.  I said, "You sound really good today." The voice on the other end told me that I sounded pretty good myself.  At that point, I realized the voice was not Mike's.  At first, I thought the operator had connected me to the wrong room.  I would try again and make sure they understood me correctly, "318A." Then I thought maybe he's not in that room anymore.  My first thought was that he was back in the ICU. Then I thought, perhaps they got him into a private room.  In fact, it is the latter.

    Good news: In the private room, he can see out of the window, see sunshine and trees. I don't think he can see the view of the valley between the mountains, but I can.

    Bad news: For me, he doesn't have a sitter anymore.  That means I feel I have to spend more time by his side if he needs anything.  Also, if his situation does change and he needs one, he has to go back into a double room.  

    The momentary confusion about the room change and its significance was another body shock. My immediate concern was he had taken a turn for the worse. I am doing the best to take care of myself, but I am facing a big change in my regular routine.  I am at the hospital 8 hours a day, even if I'm not always in his room. It's my new full-time job. In many ways, I feel all my life paths have prepared me for this.  I still could do without this change and be quite happy.

    While Jean was here sharing a room with me at the Prince Waikiki 5-star hotel, I used her blood pressure monitor and discovered that my blood pressure was 154/90.  I called my doctor immediately, and she ordered some blood pressure pills for me. I've been on them about a week and either the monitor I bought is broken, or my body is not responding.  I wrote her that the problem was persisting, and she told me to double the prescribed amount. I'm up to two pills.

    Besides the blood pressure issue, I discovered one shingle on the side of my body.  Yes, I got the shingles shot.  Yes, I'm sure it a shingle.  This will be the third time I've had it.  The first time I was 12 years old.  The second time, I was 61 and sitting in a hospital all night with my mom.  Stress causes shingles.  The last two make sense.  I can only speculate what might have been going on in my life when I was 12.

    Once showered and dressed, I went downstairs to have breakfast. The dining room was basically empty.  There was only one young girl floating around who was visiting from England as a member. Sweet girl.  Then I left to find a drug store and go to the hospital

    I stopped at Long's along my route and pulled into a street parking spot.  Horrible noise!  What now??? I saw the right rear-view mirror was bent in.  Guess how fast I was going?  Need I say more?  Rolling to a stop with my foot on the brake.  I have no idea what I hit, and, no, I was not up on the curb; I wasn't even particularly close.  What can I tell you? I'm thinking no point to contacting the Turo guy about my accidents until I have a full count.  Yes, the back of the mirror is scratched, but more importantly, the mirror that is suspended within the frame wobbles now as I drive.  I checked the driver's side mirror to make a comparison. I'm the safest driver in the world, at speed limit; it's the under 5 mph times that I'm a hazard.

    While in Long's, Damon texted me to ask if this was a good time to call his dad.  Last night I had a conversation with him about calling him every day.  I asked him if he remembered how his dad called him every day. (His parents were separated very early in his life.)  He called every third day when we were traveling through Ireland.  Damon said no, he didn't remember.  

            Then he complained that it was hard to have a conversation when you couldn't see how someone responded.  I reminded him that he fell short of being a sterling conversationalist at age three himself.  You do what you have to do. We resolved that he would call when I was in the room.  He said then I could hear what was going in his life at the same time.  Yes, everyone.  Tell him what is going on in your life; tell him funny stories.  This is not just to distract him from his current prediction; it is also to remind him that there is still life going on outside of his currently limited world and to provide his mind with stimulation. The monotony is deadening.

    When I got to the hospital room, Mike was already on dialysis. He had been on for an hour already.  He complained about being cold.  I don't like this dialysis nurse.  She does the technical end of the job but seems to have no use for the patient's needs.  Now he may not have complained to her because she never asked him how he was feeling. Nonetheless, dialysis chills you, and she could see he didn't have a blanket on him.  I got some warm ones and covered him thoroughly. 

    He now has an hour and a half left to go.  He seems comfortable and peaceful when he's not calling out something or another, even in his sleep. Usually, it's a result of a nightmare or a result of his living nightmare.

    I spoke to him more today about having a conversation with Christ and giving him peace of his mind for doing this to him.  This is Job's path.  I told him to see what Christ's response was.  I remember years ago giving Christ a piece of my mind about his failure to actually save the world.  We humans are still a mess, hating each other and trying to kill each other. The amazing thing was the calmness and compassion with which Christ received my angry words.  I can only hope Mike has a similar experience. He also has to come to Job's resolution, to accept and trust the will of God, even if he never understands His logic.

    A dialysis doctor came in to check on Mike.  They are limited as to how much liquid they can pull out because of his low blood pressure.  Usually, he has high blood pressure, which he takes tons of medication for.  Since pulling out excess liquid is a good treatment for him, the dialysis doctor decided to give him dialysis tomorrow, Wednesday, as well as his usual Tuesday, Thursday, Saturday schedule.

    One of the aides suggested that he get physical therapy now while he is in bed to maintain his range of motion. When I saw the doctor this morning, he said okay. He would put the order in. 

    How do people who don't have someone who can or is willing to sit with them most of the day do it?  There is so much the staff misses.  They are usually little things, like asking him if he wants a wet sponge to suck on, if he is warm enough or cool enough, if he needs more Tylenol if he wants his Honolulu Elsa by his side, or me kissing his forehead and telling him I love him.  The last they never do.

    I have told Mike repeatedly that I'm along for the ride.  I only have certain rules, which really apply for after we get out of here and he is on the long, long, long road to recovery:  He can't take a seat on a pity pot, he can't abuse me as a result of his frustration, he has to continue to let me love him, and he has to continue to find me funny.