Monday, February 4, 2019, 10:30 pm

            I left early today because I was utterly exhausted. Besides the grief and the worry, I don’t do well in confined air-conditioned places.  I attended a conference and was in a hotel for a week straight.  I felt lousy just from that.  I think I could die from just being in a hospital for a long time. 

            Fortunately, there are some spots for connecting with nature.  Believe it or not, just outside the parking lot. The parking lot goes down five stories. I know you’re thinking if it goes down, how can there be connection to nature.  I’m in Hawaii; everything is built into one mountain or another. The hospital itself sits higher up than the parking lot.  All five floors of the parking lot are above ground, even though they are all below the hospital building.  I discovered this small waterfall yesterday.   I heard it as I got out of the car, went over to the wall, and spent a few minutes there rejuvenating.   Today, I got a different view.  These are untended spots; its nature doing her own thing with what man has left for her to work with. 

            I met this woman staff member riding up in the elevator today.  For some reason, I mentioned the views from the parking lot.  She said yes, and referred to the waterfall.  I wonder how many of the staff members are aware of the views of nature right at the edge of this cement structure.  I thought this is just luck. Sharing this experience with someone else made it even stronger for me.

            I went to the Bnb after I left the hospital where I’m staying and slept for three hours.  I woke up around 7pm and called Mike’s son.  I told him Mike had been ‘downgraded’ (equals improved) and moved out of the ICU to a floor.  He still has a sitter, thank God.  This is someone who sits with him 24/7.  It isn’t always the same person; they switch off every 8 hours, and the sitter gets scheduled breaks. 

            I called to speak to Mike’s nurse, and the operator connected me directly to his room. His sitter, Lila (the I is pronounced like a long e), answered the phone. She said he was fine.  He was still on the nasal oxygen tubes instead of the mask.  The respiratory therapist said he would probably need to go back on the mask because he doesn’t have the strength to breathe consistently on his own.  The therapist had had him off the mask before, but eventually, his oxygen level dropped, and they had to go to plan B. I don’t know how long he had been off before, but I was pleased to see he was still off the mask.

            I called Damon to update him.  Our big problem is that Mike won’t/can’t sleep.  I have been working with him on giving up control, feeling he is the only one who can fix this problem.  He keeps asking,” What can I do?” When we tell him, “Just sleep,” he doesn’t get it. 

            Damon asked an interesting question.  He said, “Is he afraid he’ll die if he goes to sleep?” Wow! I immediately called Mike to ask him that question. The answer was yes. 

            Now, I have gone over and over with him how carefully he is being monitored and that he doesn’t have to think he has to rely on himself.  But all to no avail.  But this question is different. I called his room and spoke to Lila. She said that I had better talk to the nurse.  Unfortunately, Mike is very expertise oriented; reason alone doesn’t do the job. My word, my explanation isn’t good enough.  He needs to hear it from the horse’s mouth.   I called to speak to the nurse.  She was dealing with chest pains in another room at the time.  I was told she would call me back.  My concern is that they will just tell him again, “Just go to sleep.  This is what you’re body needs,” instead of directly addressing his concern that he will die.  He needs to hear he won’t cause his death.

            Mike and I deal with medical issues very differently. This has been one source of conflict in our lives, which we resolved by simply respecting each other’s choices. Mike is strictly AMA; if the doctor says so, it is.  He insists that conditions are all genetic; I insist that I can change things myself. We each have picked a horse to ride in this race.  I could say mine is the better one because I seem to be winning, but there is also an element of luck involved here and possibly genetics.  There is a strong possibility that his pancreatitis was caused by some of the medications he is taking.  While he grabs for the pill bottle, I rebuff suggestions that I should take pills.  I like to say that the only medication I am on is 10 mg of Lexapro for my husband’s anxiety.  There is an element of truth to that comment.  But as it winds up, it also helps with my hot flashes. ( 28 years and counting).

             Nurse Wendy, with a  thick Southern accent, called back at 10 pm.  I told her explicitly what to say to him.  I told her that just telling him not to worry and sleep won’t work. She said his need to control is a typical man thing.  I told her that it was compounded by his childhood experiences and that she should address his concerns directly and not obliquely.  That she should also be explicit about the reasons, he needn’t be vigilant himself, telling him about the people who are eyes on and the machines that will make a racket if anything looks off.  Hopefully, this works.  All prayers for Mike’s ability to sleep would be appreciated.  Not sleeping will tax his body and prolong his illness.  And I will sleep so much better knowing he is sleeping well.

Monday, February 4,2019 1:30 pm

            Mike has been complaining of discomfort with his back and the breathing mask he has been wearing. The mask digs into his cheeks, his nose, and the back of his neck.  The nurse called the respiratory therapist.  He came in. We hoped he would adjust the mask, but instead, he decided to give him a break. He put those nose thingies on instead, but the mask is 10x stronger than the regular nose thingies.  He said he tried this before, but after a certain point, his oxygen level drops, and he had to go back on the high powered mask thing.

            The therapist said he special ordered a more comfortable version of this mask for Mike.  I’m telling you, he is getting the best care possible, as far as I can see.  Do they make mistakes? I’m sure. Last I looked, the medical staff here were all human beings. Can’t beat that limitation!

            The respiratory therapist got a little overly enthusiastic about sharing information with me.  He told me he was weak and had fluid in his lungs.  And then he says something about congestive heart failure. Huh???  He took it back in a few minutes, saying it was his kidney problems that were making matters more complicated. His heart is as healthy as any 78-year-old heart can be.

            He told me that he suctioned out his lungs! Yikes! Yes, he said, it is very uncomfortable to have that done.  I pulled out about 2 cups of liquid. Mike is not strong enough to cough it up himself.

            Once he had the nose breathing tubes in, he could talk more.  He said he was scared.  I asked him if he was afraid of dying. He said yes.  I told him that we were all worried about it last week, but now he was so much better they were thinking of moving him out of the ICU on to the floor. That made him feel somewhat better.

            He asked the therapist what he could do. Oh, dear. How do you tell a control freak, ”nothing .” I did some healing with him on recognizing his helplessness. There is nothing he can do.  Both he and his mother told the story of how she let him cry endlessly when he was a baby because the doctor told her to.  He was crying in his crib, and she was crying in the living room. (It came out later the doctor didn’t treat his kids that way.  It was advice from the pediatric books of the time.) Mike felt his whole childhood that he had to do everything on his own; he thought he couldn’t rely on his parents. Hmm! Time to learn that strategy doesn’t always work. To boot, he wasn’t alone in his crib.  His mom had not abandoned him.  The work we did relax him somewhat.

            I made it clear that we are in for a long haul. An old friend of mine contacted me through Facebook and told me that his brother had suffered from this. His brother emailed me with a pretty detailed description of his recovery.  It was long; it was hard; it was dangerous.  He was in and out of hospitals for five months, and he was 54 and didn’t have kidney problems.

            Assuming Mike will be in any state to do something for half an hour to an hour straight when he comes home, there are those of us who are already planning alternatives.  The Bible study group can meet at our house.  My niece Shivani says her partner can set up some long-distance tech stuff so he can counsel and teach courses right from our home too. 

            The big thing for Mike will be accepting limits, temporary or permanent.  Right now, he seems well enough that it’s a good time to start praying for that for him. If he comes out of this with gratitude for the experience, he will be a truly amazing person with so much more to offer.

Monday, February 4, 2019, 12:30 pm

            I'm at the hospital now.  I called before I came and they told me he was the same.  When I arrived, the nurse told me he was downgraded. Wow! That's a heart-stopper.  However, it means he's improved.  They are thinking of taking him out of the ICU and moving him to 'the floor.' This is excellent news.

            As it stands now, he is still on that powerful breathing mask and has a 24/7 sitter.  Given how feisty he is, I am hoping they keep the sitter.  It is a great relief to me. 

            Mike asked me to do the rosary with him.  I would much rather it be the Powerbook. I am exhausted. I'm sleeping well when I sleep, but I don't sleep as much as I usually do.  I get six hours here.  At home, it's more like 8 to 10 at night and then another nap during the day. 

            When this all started, I was up for 36 hours straight. They called me from the dialysis center, told me he had thrown up. The dialysis was going to have to be stopped,  I was to grab a clean pair of pants and come pick him up. That didn't sound bad.  When I got there 45 minutes later, he was in the bathroom with severe diarrhea and throwing up at the same time.  I went into the bathroom to be with him. I couldn't stay there because the smell was so bad, and I have a high tolerance for organic odors.  He was already groaning and complaining of abdominal pain.

            I proposed calling an ambulance.  The nurse on duty called the kidney doctor in Honolulu.  I have no idea why, but he reported the doctor as saying it sounded like a GI virus and to send him home. He'd be fine. Mike had had a big protein chocolate chip cookie and felt that was the cause of his problem. The nurse concurred. I argued he needed to go to the hospital. The nurse shrugged, turned his back on me, walked away, and told me to do what I wanted.  I didn't call an ambulance, which was just as well.  If I had, we would have had to wait for it to arrive.  When it did, it would have eliminated problems like heart attack and stroke and told me to take him to the hospital.    The dialysis clinic is halfway between the hospital and our home, so it was great it happened there instead of at home.

            By the time we got there, his pain level had increased. He was calling for something just to knock him out. When the doctor finally saw him, he probed his abdomen and order morphine.  I suspect he knew what the problem was immediately. They gave him another dose of morphine, and something else starting with an A, Ativan? That last one knocked him out.  The drugs also depressed his breathing, and he was put on oxygen.  The Kona hospital did a sonar gram and a CTC scan.  They told me that he would probably have to go to the Honolulu hospital ( we live on the Big Island).  I went home to pack. 

            I got home around 12 midnight.  I quickly put Elsa, our dog, on her leash and rushed her down to Yvette.  I called Yvette's name, explained the problem, and she took Elsa in immediately.  Poor Elsa ran after me as I went to leave.  She had never been so summarily dropped off before.

            I was back at the hospital by 1:30.  They had told me the ambulance wouldn't be there till three. They were there early.  I wheeled in my suitcase.  They took one look at it and said that it wouldn't be allowed on the plane. They told me that the pilot would decide.  I would have had to leave it on the tarmac. As I left to drive myself to the airport, the ER doctor told me my husband was in critical condition and gave me a sympathetic hug.   No, it didn't make me feel better.

             I drove myself to the airport at a good clip.  Mike was still in the ER when I left. I pulled into the parking lot and watched the ambulance pull up immediately.  I thought they said they would meet me at the entrance.  They didn't.

            I had some shopping bags in the back of the car.  I repacked what I could.  Then loaded down with these shopping bags, I made my way into the driveway where I had seen them pull in. I'm screaming, "Hello, hello!?" There is no answer.  Here I am an old lady, loaded with shopping bags, making my way down a driveway at 3 am. Finally, I hear a voice say, "Stop  yelling." Okay, let's say his hemorrhoids had the better of him.  Why couldn't he have answered? I'm scared to death they're going to leave without me. I'm alone. I'm frightened.   

            I went through this large gate when the grouch opened it. He gestured randomly and said, "They're over there." I see three planes.  Let us remember that I'm under a little bit of stress. I asked which one. He said where the light is." His tone makes it clear that he thinks I'm a waste of space. Now there are bright lights all over the place.  Finally, I see the one nearest one plane and head over there.

            This plane is about the size of a large pencil. The attendants managed to get my stuff into the "cargo section," which is a cargo net hanging from the ceiling in the seat next to me.  Besides Mike's stretcher, there are two attendants, me and this cargo net.  Oh, yes, two pilots in the cockpit. Fortunately, it was a clear night, and the flight was smooth.  Unfortunately, it was pitch black, and I couldn't see the ocean surface to enjoy the view.  The landing was one of the smoothest I have ever experienced.  It is my understanding the smaller the plane, the harder it is to land a little plane smoothly.        

            Then we were in the ER.  I sat with him; he was quiet because he is so doped up. We waited. I don't know how long.  We are finally given a room on the first floor. It was a double room; they told me they would move him when a single opened.   He was entitled to a single because he's off-island. All patients who don't live in Oahu are given private rooms so their caretakers can stay with them. Where else are we going to go?

            They finally move him to a single room.  I ask for a lounge chair which opens up into a cot; it's called a cot because that's how wide it is,  the width of a chair.  They tell me they have none available. "What am I going to do?" They told me to go to a hotel or sleep in a chair. I told them the hotel is out. I'm not leaving him.   It was  6 pm. I had been up for 35 hours. I was tired. I start to fall asleep in the chair.  It was too uncomfortable.  I slid down to the floor, using my arm as a pillow. It was too cold.  I asked for some sleeping pillows.  They give me two pillows, saying that was all they had and several hospital blankets.  I put the two pillows on the floor end to end, one blanket on top of the pillows, the others on top of me, and slept peacefully for twelve hours.

            The next day they brought me a cot. Fortunately, Mike had a sitter with him because he asked to go to the bathroom every 15 minutes to half an hour. His distended abdomen, from the pancreatitis inflammation, put pressure on his bladder, and the chemicals from the fluids in his gut were also provoking his bladder.  He didn't have to urinate at all.  The man was being tortured as far as I'm concerned, not by the medical profession but by some other force. 

            We came on Friday; early Tuesday morning, I was awakened by, "Mrs. Ross, you have to get out. This room is about to be filled with people." It was the first call by the emergency relief team.  They didn't give me any information at the time.  I called my friend Judy at 1 in the morning.  She stayed on the phone with me until they stabilized him. They moved me and my cot back into the room, and I went back to sleep. Only to be awakened again around 7 am when the dialysis team came in.  Mike couldn't go to the dialysis unit because he was suffering from diarrhea, and they were concerned he had c difficle. (As it wound up, he didn't). The room was jammed with people and machinery.  I got up, went to use the public bathroom for a little self-repair, and went to have breakfast in the cafeteria. 

            When I came downstairs, the hallway looked like people were in line for a rock concert.  I asked one of the transport attendants, "Is it me?" It sounded like a good question to me at the time.  He said, "No! It's room 103. ""That is me!" This time he was moved to the ICU.

            This sweet male doctor knelt by my side and tried to explain what was going on. He had his hand on my knee as he spoke. I told him that it felt comforting.   Oops!  He hadn't even realized he was doing it. He apologized.  I told him not to worry, it wasn't a "Me, too" moment. 

            I had been in touch with Jean, Mike's first wife, and Damon's mother, previously and said I might want her to come out.  She was at Damon's at the time.  She babysat their 15-year-old son, August, while they vacationed in NYC. Now, with this development, I called Damon. He booked a flight for both of them for that day. 

            When we got to the ICU, I was sent to the waiting room. I immediately called someone Mike knows well through the diaconate program and said, "I can't be alone." He said it would take him and his wife 30 minutes to get there. However, someone was there before I even left to follow Mike to the ICU unit. Lina, the diaconate secretary, who lives right around the corner from the hospital, got the message and came right over.  I hadn't had a lot of direct contact with her and didn't even recognize her outside of the office. However, she was a blessing.   John and Kathy arrived once I was upstairs.  There was a third person, the Chaplin with the diaconate program. She is a lovely Korean lady whose name I dare not try to spell for fear of mutilating it.

            Lina, the Chaplin, and John left, but Kathy stayed with me the whole time.  I made a sleeping area for myself in the lounge and fell asleep.  John came back, and the two of them stayed with me until Jean and Damon arrived shortly before ten.  They left once they had handed me over.

            We have so much support here in Hawaii. Mike has provided all of it.  Even the friends I have are ones I have met through him. And then there is the whole deacon program, the entire parish, all the folks from the seminary where he worked in Ohio, the list goes on.  There are so many people praying for him. Whatever the outcome, I will assume it is what is best for him.

This attitude is not borne out of Catholicism.  No, I was taught it when I was still a child.  My uncle, Werner, taught me the army clean-up philosophy of life: "Move everything you can move. What you can't move, paint green and call good." It always sounded like a good philosophy to live by to me.

            Next entry will be what happened after Damon and Jean, and finally, Shivani arrived.