Tuesday, February 19,2019

Good news: As far as I know, Mike is still alive.  He is down in imaging, getting CT scan and another tube inserted into his abdomen.

Bad news: He is now in the ICU.  The doctors are not optimistic about his chances of surviving.

   

    I slept in his room again last night.  When  I woke up, he was asleep.  I thought, “This is great.  He is finally comfortable and resting.  Wow, this is going to be boring. I’m not going to have anything to write about.”

    Then his blood pressure dropped. It was a low as 85/50. His oxygen level was dropping too.  The nurse, following the doctor’s orders, did all she could to raise his blood pressure.  Finally, he was unresponsive. The hospitalist had already checked room availability in the ICU.  The decision was made to move him.

    Once in the ICU, they intubated him.  They were preparing to take him down to get a Cat Scan.  I heard two different reports: it was just going to be a Cat Scan, and they were not planning any procedures; and, they were planning to stick a tube directly into the pancreatic sack.

    Dr. Izawa came into the waiting room to talk to me. I called Damon so we could have a three-way conversation.  I know that Mike wants Damon involved in the process.  After I tried to do some healing techniques with Mike, I think he started fearing that I would use those and not approve standard medical approaches.  That was never a thought. 

    Izawa told us that they had extracted 5 liters of liquid from his abdomen already since yesterday. However, they never found a particular substance, something like amyloids, in the fluid that would mean they were pulling out the liquid from the pancreatic sack.  His blood was also showing a high white count, meaning he has an infection somewhere in his body. 

    As they rolled him out to take him down to the imaging room, I heard a nurse say, “Do a head scan.”  I saw her try to provoke Mike into responding, “Open your eyes, Michael.” His face flinched in pain as I accidentally moved his breathing tube, but that was it.  I thought the worst. The doctor told me he wasn’t too concerned about brain damage, but since he was getting scanned anyway, he thought he would throw it in for good measure.

    All our stuff was brought up from room 319, plus two packages which had just been delivered.  The three beautiful plants which had been sent, and they were the nicest ones I had ever seen could not stay in the ICU.  I had to take them somewhere.  We had accumulated a fair amount of stuff in three-plus weeks.  The clerk on the 3rd floor ordered a rolling cart, it was loaded with 4 shopping bags, my briefcase, Honolulu Elsa (a small white stuffed dog that Judy sent that looks just like her), the two packages which had just arrived and the plants and wheeled up to the ICU.  Robert, the clerk in the ICU, took it downstairs to help me load it in my car.  While he took the cart down to the lobby, I had to follow Mike because I had to sign a release form, giving them permission to stick more tubes into him. I was going to drive the plants over to the ashram while Mike was being processed.  I was told the procedure would take only an hour.  I was concerned since they had started the procedure before the doctor arrived with the release form that I had to sign that I wouldn’t be back when he got out. They had told me this would be a quick procedure, so I stayed.

    I had given permission for them to try to get a tube into the pancreatic sack.  Mike wasn’t back up from the procedure yet, but I ran into the doctor in the hallway, and he updated me.  Everyone’s pancreas is located toward the center of the body.  Mike’s is located in a position that they cannot get at it directly with the drain tube without doing damage to tissues and then spleen.  They felt they couldn’t go in that way.  They are choosing instead to go in through another part of the abdomen, which is hopefully contiguous with the pancreatic sack and will drain it.

    The other option is an operation.  Mike would be unlikely to survive an operation now.  That will only be tried if it looks like he is going to die anyway.

    The CT scan showed that he had fluid in his pleural sack, the sack around his lungs.  The liquid would have accumulated as a reaction to the aspiration pneumonia when he breathed the bile coming up from his stomach into his lungs. In response to that, they placed a tube on each side of his body to drain that liquid.

    Then they tried to get another tube directly into the pancreatic sack.  Whoever the tech was felt he couldn’t do it without damaging other body parts, I believe his spleen.  Instead, they placed a tube into another section of the abdomen, higher up than the first one which was placed in the morning, and hoped it would be contiguous with the fluid in the pancreatic sack.   I was told that he had eliminated 5 liters of fluid from his stomach just through the first tube.

    Tube count: 

        -A breathing tube, intubation.

        -GN tube: goes down to his stomach and drain the bile from it

        -2 tubes into his abdomen draining peritoneal fluids. Hopefully,

        one of them will drain his pancreatic fluid.    

           -2 tubes on either side of the body, each one going into one of the pleural sacks.

                     - A portal for his dialysis, (not a tube, but a port for tubes.)

        -A tube for the TPN, which is thicker than the normal intravenous tube and delivers liquid nutrition and some medication.

        - One regular intravenous tube for saline and some other medications.

        Total  -9

        

    It was 3 ½ hours before he was back, and I went checked once myself.  I sat in the ICU visitors’ lounge writing this.  I  went into the ICU a second time, and there he was. Ah, I was quietly thinking something had gone terribly wrong. No.   The nurse was apologetic and told me he had only been back for 10 minutes.

    I’m exhausted from this day. I drove over to the ashram to have some dinner and deliver the flowers.  If I left them here at the hospital, they would probably have been thrown away.  Then I stopped at Long’s on the way to the hotel to get a larger back brace.

    When I arrived at the hotel where I stayed the previous two nights, which is built more like an inn, I checked in.  It’s not elegant.  Damon was upset that I wouldn’t spend more money to get a better class of hotel. This one was just 2 ½ stars on Yelp.  I pointed out to him that I had spent one night sleeping on three chairs, pushed together in a small bathroom with my head next to the toilet.  My standards for acceptability aren’t very high.

    However, I did make a videotape of what would have been my walk from the Bnb room to the bathroom at the ashram. I texted them to family. The responses have been hilarious.  

Monday, February 18, 2019

Good news: Mike survived the night.  He had a tube put into his abdomen and feels better.

He was complaining that his penis hurt a lot.  I was afraid it might be a urinary tract infection.  It was just an external problem and easily solved. 

Bad news: He had dialysis.  He has an awful reaction to it and suffers a lot. 

     Monday's news really starts on Sunday night.  A surgical resident under Dr. Izawa came to see us. Mike's condition was considered tenuous, and it was appropriate that I spend the night. Because his room is too small, they couldn't fit in one of the cots they have for visitors. I proposed lying on the floor, but there really isn't even enough room for that.  Then I noticed that there really was enough space in the bathroom for me to lie down.  I asked for three sleeping pillows and a blanket.  The hospital aide who was the sitter, Abi,  pronounced as Abby, who is six months pregnant and looks like she's in her eighth month, said she would get me three chairs to sleep on. She got two with arms and one without.  I put the blankets on them, lay down, read for a while, and went to sleep.  

    I can sleep anywhere.  In fact, I can sleep better on a hard surface than I can on too soft a mattress.  And, I have a conveniently located toilet. Couldn't be closer.  Abi put a cloth over the toilet seat.  Everyone is more concerned about me sleeping in a bathroom than I am.  I remember that toilets are cleaner than the door handles to the bathrooms.  Also, these floors are washed daily, and the only person using that bathroom is me.

    Yes, I fell asleep by about 9:30.  I woke up at 12 midnight to Mike, yelling, "Help me! Help me!" His general complaints, I find somewhat comforting; it tells me he's in there fighting, but when he cries out, "Help me!" that's too much.  I did some work on his feet, which relieves his general aches and pains and then sat by his side and rocked his arm back and forth, bending it at the elbow.  This relaxed him and put him to sleep.  

    The charge nurse came in. He's a big man who resembles a truck driver.   At midnight, when I was up soothing Mike who had been calling out,  he came in and told me to leave Mike alone.  He said he was quiet now.  I pointed out that he was quiet because of my impact.  The aide said he was not good with women.  

    After he was asleep, I went back to sleep and slept several more hours.  I have friends my age who have trouble sleeping and can't imagine being able to sleep long hours at all, no less in such weird circumstances.  Mike and I are both good sleepers.  I like to say it's one of my retirement hobbies.  We can both sleep up to 12 hours a day, including naps. 

    Mike woke up early, still complaining. His vitals were good. I'd like to think that my staying the night was helpful, but who knows. I also know that there are an untold number of people out there praying for him. When I called Judy to tell her that it was a problematic night, she called Brenda, who works in the parish office. Brenda put out an emergency call for prayer, not to mention all the deacons and their wives, folks at the seminary in Ohio, my sister's knitting group, the Krishna's, the church prayer groups of various friends, etc.  He is one beloved, valued dude.

    Today was D Day, they were going to put the drain into his abdomen. This is a risky moment.  The doctors are pleased with how well he is doing this morning.  They are somewhat surprised; his vitals weren't very good last night.  They took him off the TPN, intravenous nutrition, and put him on dopamine to raise his blood pressure.  It worked.

    Damon texted me he had called the radiologist, who would be inserting the tube who said no worries.  It was a standard procedure, and he had done something like 300 of them.  We were told it was a crisis moment.  The radiologist could actually refuse to do it because of his concern for Mike's health. There was a serious concern that he would get an infection from the tube.  They made it seem almost likely.  

    I took advantage of his absence to go to the car, get a change of clothes, come back up and take a shower.  While I was in the shower, Mike came back to the room after they inserted the tubes. He was moaning from what I could hear, and I dreaded coming out of the shower.  When I did come out, I discovered he was singing the praises of the doctor because he felt so much better.  Shortly after I finished dressing, the nurse emptied the bag holding the drained fluid.  She got 2 liters. And there was more coming.

    He sang in joy.  Mike cannot sing.  We sang our crazy version of happy birthday together. He was so grateful for the relief. 

    Then he started complaining his penis hurt.  He was yelling as loudly about this as he had about the pancreatitis attack.  He said he was experiencing throbbing, pressure, and burning. He thought it was coming from the inside. I was afraid he had an infection from the catheterization. It was a frantic moment for me.  The doctor came in and thought it was more probably external. They treated it externally, and he experienced relief.  Again, he said how grateful he was and burst into song.

    No sooner had that pain been relieved when the dialysis tech came to set up for an extra two hours.  During the dialysis, he was yelling too.  It has become a pattern when he is distressed. I'm not sure if there is really something wrong, or it's just that he is worn out by the endlessness of this process. And it does seem endless. The man gets no real relief. It's four o'clock now. Hopefully, he will be able to rest comfortably for a while.  Unfortunately, they may decide he has to go on the bi-pap again for the night. No one likes that.  Mike complains for the whole night. The nurse told me a lot of people do. In Mike's case, the bi-pap rubs his nose raw.  He looks like a kid who skidded on the pavement on just his nose.  I don't know exactly how someone would do that, but you get the idea.

    During dialysis, Mike started howling big time.  I finally told him to stop it.  He had experienced so much relief during the day.  What he had to deal with now was just the dialysis- and of course, being stuck flat on his back and unable to move due to weakness. I have been trying to teach him meditation techniques to help him. Even trained meditators, not meaning professional religious, have trouble meditating when the distress is too great. Mike has no training. He's been thrown into the pool of pain, discomfort, and lack of control way over his head.  Mediation isn't easy, even when you're not in distress.  It is so much more difficult when you are. I'd encourage him to scream and complain if I thought for one minute it would help.  

    Ironically, it was Mike and my friend Carolyn who taught me to stop complaining.  When I was in my mid-30s I was in serious conflict with another woman. I complained, complained and complained. Talked about it close to non-stop. Mike listened for a while. Then on a Wednesday, he said to me, "I love you dearly. You have till Friday to fix this.  After that, I don't want to hear about anymore." Wow!  I felt so much relief.  It was almost as if I thought I had to complain for some reason.     

    The second incident revolved around my mother, who was a difficult personality, particularly for a child.  While she wasn't very easy to get along with, she was loveable, and as one woman who met her said, she was capable of love.  I spent a good part of my life talking about her.  Then my friend, Carolyn, said, "No More Margaret Stories." Another shock.  I didn't have to talk about my mom all the time; what a relief!  Freedom from constant restating of the problem; freedom from complaint. Fantastic! Life-changing.

    Once the dialysis stopped, he was peaceful. Yay!!!  

    My friend Judy called to say she was unable to find a place for me at the Catholic retreat house.  It was all book through the end of March. I had spoken to Govinda, the ashram manager, earlier in the day. He was trying to arrange for a room with a private bath.  He said he hoped I would return.  I had become part of the ashram family- the mother. He said he would be sad if I couldn't stay with them. He encouraged me to come for dinner.  He reminded me that they had great food.

     Govinda is the oldest person there at a mere 64.  I am almost old enough to be his mother: Some middle-aged people could easily be my children, and some twenty-year-olds, who could be my grandchildren.  Hawaiian culture is generally respectful of the elderly.  It makes it a great place to retire. 

    Since Mike was sleeping peacefully, I decided to take up Govinda's offer and use the opportunity to wash some clothes. I drove there directly from the hospital, started the wash, and left to do some shopping at Long's Drugs.  I mainly wanted to go there because they were having a sale on Hersey chocolate bars with almonds. We all have our priorities.

    When I returned to the ashram, my wash wasn't done yet, so I had some dinner after I filmed "my pathway' to the bathroom from the room Govinda had arranged for me to stay in the other night room.  Again, so sad, I can't share it with everyone.  I met one of the middle-aged members of the temple who was visiting from the Big Island. When she heard that Govinda had put me in that room, she said, "No, no, no!  You can't stay there." She said he tried to put her in that room. She said absolutely not.   She also noted that the shared bathroom was a mess because it was used by the men. The men make a mess, and the women clean it.  It seems like Govinda may be missing a few synapses when it comes to judging what people might consider adequate housing.  My first room is just fine.  It is large with a queen-sized bed and a nice private bath.  Totally appropriate for a Bnb.

    I didn't have too much for dinner.  I haven't been very hungry. Not sure why. I had put the wash in the dryer during dinner.  When it was done, I headed back to the hospital.

    I was concerned about what I would find.  Would he be on the bi-pap and be in discomfort or pain? Would the inserted tube have seeded an infection in his abdomen and created additional complications?  Would he be in the ICU? I had left them my number, but no one had called. I feared for the worst and hoped for the best.  He was on the nasal cannula and doing well. He reported that he wasn't in any pain. While he is still often difficult to understand, his speech was clearer. The pregnant hospital aide that we had last night  was with us again. Mike's room was slightly rearranged, and the chairs, my bed, were set up by the window.   It will probably be less convenient for me. The bathroom is darker than the hospital room, where a light is on all the time. The hospital staff is more upset by the prospect of me sleeping next to a toilet than I am.  

Sunday, February 17, 2019

 Good news: He was sleeping peacefully for most of the day.

Bad news: They inserted a nasal- gastric tube. 

His blood pressure and oxygen levels dropped precipitously.  The rapid response team was called. He was stabilized.  The surgeon said they hope to put drain tubes into his abdomen tomorrow.  He was in bad shape at the end of the day. The doctor thought it was a good idea that I spend the night in the hospital.

    Boy, it was lovely when I came in.  He looked to be sleeping peacefully for the first time in a long time. His face looked relaxed. I was happy to sit by his side and write up Saturday's log.

    All went well until about 2:30.   He had been coughing a fair amount.  It sounded like he was bringing up flehm from his bronchi.  The respiratory therapist came in and examined him.  He noticed that when the liquid was suctioned from his mouth, it was green.  That means that that liquid was bile coming from Mike's stomach. If he inhaled it, he would have pneumonia again. 

    They decided to place a nasal gastric tube into him.  Oh, yay.  This means forcing a tube through his nose down into his stomach. Mike had a procedure like that done when he had his swallow response tested. He said it was the worst experience.  Of course, he hadn't had his pancreatitis attack yet.  His definition of pain has been permanently altered. Knowing what was involved, I had to leave the room.  I knew it would be terrible.  They assured me that once he adjusted, it wouldn't bother him that much.  At first, he was moaning and complaining.  His face, which had been calm in repose earlier, was now furrowed. 

    Three people who were involved with the deacon retreat this weekend, Clarence, Vi, and the monsignor who taught at the retreat, came to visit him around 3 pm.  He had just stuffed that tube stuffed down his throat.  He was in serious discomfort and moaning.  They prayed over him and blessed him.  Vi suggested that I ask for the pain nurse to be involved. Who knew there was such a thing as a pain nurse?  There are so many things I don't know.  I didn't understand why he wasn't given some pain medication right after or during the tube insertion.  I think I do now.  Pain medication, other than Tylenol, can lower his blood pressure. That is what happened the other day when they gave him Ativan and had to follow it with Narcan.

    The group of Baptists who come around to sing to the patients every Sunday was here again.  Again, they came into Mike's room at his request. 

    It was shortly after that I told abruptly to leave the room because the rapid response team was called in. It was a combination of low blood pressure and a low O2 count.  They were laughing as they worked on him.  Two security guards were standing outside his room. They said when the team laughs like that, it's a good sign.  I was prepared to hear it was black humor.  I could cope with that. How else do you deal with such difficult situations daily?

    I asked the two security guards why they were there.  Were they there to manage hysterical family members?  They said, "No," they were there to clear the way before the stretcher as it moved quickly to go to the ICU.  I made a circling motion in the air and said they were the sirens. They agreed. 

    After the rapid response team cleared out, a surgeon who works with Izawa came down to talk to me.  She told me that they would ask the imaging department to place a drain tube in his abdomen tomorrow. This is a tricky move, at best.  There is a threat of bacterial infection.  She made it sound quite problematic. She said Mike had taken a turn for the worse. The had him on antibiotics. I was told that he had mild pneumonia again due to aspirating the bile from his stomach. The respiratory therapist asked me again if I wanted them to do everything they could to keep him alive.  I said, yes.  I think everyone in the family is of that opinion.  If there is any chance, he can fully recover and continue to have a full life, definitely.

    Damon and I have running debates as to whether we should be optimistic or pessimistic.  Damon is a do-something kind of guy. When I tell him to talk to his dad, he says something like, "I don't have any news yet because I haven't spoken to Izawa. "I say, "Say, I love you, Dad."  

The same goes for when I call.  He wants to do something to fix his dad's situation and mine. All I want from him is to listen and tell me he loves me.  It doesn't come easily to him. He's a man of action.

    The surgeon who spoke to me was giving a grim picture of Mike's immediate prognosis. When I asked her if I should stay the night, she said yes.  I tried to get through to Damon that this might be it. We were arguing back and forth until he finally said, "I'm good if I'm not there when Dad dies." His wife, Cylin, finally figured out why I was pushing Damon to come to HI from LA immediately. Damon has a busy life. He's perfectly right; he can't just jump on a plane every time there is a possible emergency.  Hearing that from him eased my apprehension.  I was concerned that he was in denial and would feel regret if he was wrong.

    I'm sitting by his side now.  His blood pressure is 106/57 and his O2 level is 98, but on the bi-pap, and that says nothing about his CO2 level. The bi-pap is supposed to get rid of the CO2.  He is calm again.  I am watching the bile from his stomach being pumped into  a container.   It certainly seems to have slowed down from earlier today. He is apparently accumulating bile in his stomach because he digestive processes have been slowed down. I asked the doctor if she heard any noise from his stomach. She said no.  Not a good sign. It means that his digestive tract is not processing the bile from his stomach.  It just sits there and accumulates.  Then he brings it up and aspirates it into his lungs.  This is why they had to call the rapid response team; his lungs weren't functioning properly.

    Mike has been calling out several things tonight. "I give up," is the most frequent. From his tone of voice, it sounds like his response to his captors when playing Hide and Seek or Cowboys and Indians.  It doesn't sound like a surrender to death. 

    One of the things he started saying is, "Hidey, Hidey, Ho!" Anyone remember Cab Callaway?  I asked him if he wanted me to find him on YouTube.  I played Minnie the Moocher, and then a bunch of Calloway songs, which he seems to enjoy. They were at least distracting.  I had no idea that Mike even knew who Cab Calloway was no less had an interest in his music.

Saturday, February 16, 2019

Good news: Mike remains stable.

Bad news: It was a hell of a day.  He was on a bi-pap (an intense oxygen supply device, just one step down from intubation), which requires a tightly fitting face mask. The top of his nose is raw.

It was his regular day for dialysis.  He suffers a lot during the process. Also, the dialysis nurse was only able to extract 1 liter of liquid from him.  Three is an average amount; five is high. 

Fasten your seat belts.  This day was stressful from beginning to end.

    My phone rang at a quarter to 4. It woke me, but I knew any calls at that hour had to be a scam coming from the mainland. I was asleep again right after the last ring. Then I woke up somewhat later and thought, "Maybe it's the hospital." Yes, indeed. A few heart palpitations.  I listened to the voice message to see who I would have to contact.  The message said, "Nothing urgent.  Just a change in his treatment." I called and found out that he had been put on the bi-pap because some blood test showed his CO2 level was too high.  These breathing devices are not just to supply a higher density of oxygen, they are also designed to apply pressure to push the CO2 out of the lungs. From what I've seen: the lowest level is what you see people who have breathing problems walking around with.  The next level is the high flow nasal cannula.  This looks very much like the nose thingies you see people walking around with, but has thicker bands that go across the face and over the ears, holding it in place.  It is called a high-flow cannula because air is actually pushed into the lungs under pressure. The next level is the bi-pap, and after that is intubation when they shove a tube right down your throat.  I thanked the doctor for letting me know and went back to bed. 

    My getting up was only a problem because my back was hurting. I think it's a damaged disk. It's not sciatica., no pain down the back of my legs.  I had some trouble going downstairs because I was in pain. I eeed, owed, and uhed my way down the stairs, had breakfast, and prepared to leave.  I left my phone and my water bottle in the room.  Abby, the young girl, really a woman, I mentioned before, collected them for me as well as delivering my dried laundry to my room after collecting it from the dryer. 

    Convinced I knew my way to the hospital by now, I left without turning on Lady Gaga.  Okay, after I was 10 miles in the wrong direction zooming down a 4-lane highway, actually eight, if you count the lanes in both directions, I pulled over and resorted to the GPS.  Good thing it wasn't rush-hour.  I made it back, having lost about half an hour.

    When I arrived, Mike was in the middle of dialysis with his bi-pap on and absolutely miserable.  I spent most of the day doing what I could for him.     Seeing his agitation, I asked if he could have something for his anxiety. The nurse gave him Ativan.  He also told me he had been given Ativan last night. His respiration dropped dramatically, and he was unresponsive. They gave him Narcan to bring him back.

    Remembering the conversation we had yesterday, he kept calling for Izawa, the doctor in charge of his pancreatitis issues and the overseer of his care.  He wants Izawa to do something quickly.  He doesn't understand why it's taking so long.  I can understand his dilemma.

    Damon had requested that Izawa call him directly.  I had reported what Izawa had said to me, and Damon wanted to see if he had a different slant on what Izawa had to say.  He sure did.  Izawa gave me a primarily pessimistic report.  If we have to put tubes in, it leads to a slippery slope, and given his kidney problems, it doesn't look very good.   He gave Damon a very different picture.  

    First, Damon asked him if there was life after pancreatitis.  Izawa said, "Absolutely!" I knew that already from Tom's report of his recovery.  Then he asked what would happen if they put the tubes in.  Putting the tubes in is in NOT considered a surgical procedure.  I don't get it.  You make a hole into someone's abdomen, and that's not surgery?  Well, according to them, no. It's like a 100.3-degree temperature is not a temperature in a hospital.  I feel as if I've landed in another universe. There is a whole language to learn and behavioral norms.

    Putting the tubes in invites a bacterial infection.  Damon asked if they would do what they could to prevent/combat infection.  Yes, they would test the site and do everything they could.  Damon walked away, feeling, "They got this under control" Me, not so much. But his upbeat attitude gave me a lift.

    While Damon and I were on the phone comparing notes, the hospitalist, who happens to be the wife of Dr. X, (yikes), a lovely straightforward lady from the Bronx, who can deliver difficult news and have compassion. (By the way, I was told that the behavior I experienced at Dr. X's hands is very unusual for him. He is usually a mellow guy.  Love it!  I must have triggered something in him. I probably remind him of his hypercritical and dismissive mother.  Remember, I told him that I couldn't take in all the information he was throwing at me.  I thought I even said that I was on overload. ) 

    At any rate, his wife gave us details that again left me feeling down, and Damon feeling upbeat.  Of course, I'm exhausted from this experience, particularly on this day, when I had no opportunity to write.  The writing has a very positive impact on me.  It relaxes me.  I think it is a form of play, figuring out how to express what is going on in words.  

    The things she said that alarmed me were that the TPN, the intravenous nutritional supplement, it loaded with sugar for calories.  Bacteria love sugar. She also talked about a form of encephalitis that can result from something.  She spoke about his blood pressure dropping too low and surgery being impossible.  There are so many snares ahead of us, and his age and kidney disease work against him. I'm finding it a little harder to be optimistic.  Thank God Damon is holding up the optimistic end. 

    About an hour into the dialysis, I actually climbed into bed with him.  That calmed him a little. I leaned over the rail of his bed and put my head on his pillow into bed with him. The dialysis nurse and the hospital aide, who was his sitter, were fantastic.  They moved him over to one side and encouraged me to get in bed.  I commented this would make a great picture. The aide went into the hallway where my phone was charging and came back to take that picture. I wish I knew how to incorporate photographs into the text from my phone, but I don't.  I did send it to family members. I spent the last 3 hours of his dialysis lying next to him.  He said it made him feel better.  I said we have a date every T, T, S, which are his usual days for dialysis.

    I felt I had to pee.  In the past, the dialysis nurse has allowed me to wiggle past all the dialysis equipment to get to the toilet.  Jeff, from the other day, had no problems, even though I couldn't close the door. He just looked the other way. Who wants to see a 78-year-old woman pee? But, this time, the nurse said no,  So I had to make a run for it down the hall to the public bathrooms. Oops! While my bladder remains operational, unlike Mike's, it is no longer open to negotiation.  

    I left late tonight at almost 7:30 pm. I wanted to wait until the bi-pap was off, and I was sure he had been moved after four hours of holding still for the dialysis. 

    I went off to the ashram. I knew I had been moved to a different room because my Airbnb had expired. Govinda, the ashram manager, had called me at the hospital to say that he had to move me to another room because the room I was in had been rented.  He had told me upfront that he couldn't give me the room straight through because others had already made reservations.  I said, "No worries.  Just gather up my stuff and put it in the new room." 

    Govinda had told me that I would have to share a bathroom instead of having a private one.  I bought a robe from Target for that very purpose.  I don't know what you think of when you hear 'shared bathroom,' but my vision was one bathroom on a floor with several bedrooms. Not!  After dinner, someone led me to my room.   It was a 6 x8 space with a door leading directly to the outside with no inside access.  The light switch was tucked into a corner.  You had to grope for it in the dark.  There was a bunk bed made of unfinished, as in the sense of just fresh from Home Depot, 4 by 4s hammered together to be functional.  The mattress was one of those old spring ones that I haven't seen since I watched an old cowboy movie. To get into the room, I had to step up, two big steps.  One to stand on the cement blocks serving as a step, and the second to get into the room. But the best part was that there was no bathroom attached to the room.  I was expected to go outside in the dark of night, clamber over some stepping stones to find this 'shared' bathroom.' I have to pee 2 to 4 times a night.  These quarters might be good for a 20-year-old, but it was downright dangerous for me.

    While I was waiting for Govinda to come back to see if this is what he really meant for me, I called Judy to share my situation.  She had the only appropriate response; she laughed with me. She pushed me to make a hotel reservation. I found one place that had something that looked like a reasonable rate and booked it through Booking.com.  

    When I got to the hotel, the guy told me I had made a reservation for the next night, not for the 16th.  Booking site showed the 17th, and I just assumed it was the 17th.  The hotel is in the middle of an industrial neighborhood.  Certainly not 5-star.  Not even top-shelf.   The guy and the front desk tried to find me a room.  He said for $55 more, I could have a room with 4 beds.  It was the four beds that got me.  It felt like I would feel so isolated and lonely.

    I tried to call the Ambassador Hotel, but I got there 800- booking number, which is somewhere on the mainland.  They told me to call the hotel number.  When I asked for the number, they gave me the same one I had just called.  I checked as to which was closer to where I was at that moment, the Ambassador or the Airport Hotel. When I got to the Airport Hotel, there was a line of 50 to 75 people.  A plane that was supposed to fly to the mainland was unfit to make it across the ocean. These good folks were being put up at the hotel on the airline's dime.  When I realized they all had their booking already, I went up to the register to see if there would be any more rooms.  Nope. I thought, okay, let's try the Prince where Damon put us up.  On my way over there, I thought, "I'm right here by the Ala Moana. That's where we stay when Mike is in the hospital." As I was approaching the area, my phone rang.

    As I was approaching the Ala Moana, the phone rang. It was Judy saying she had found me a room. She said even the Ala Moana was completely booked. All the rooms in both Honolulu and Kona were booked. It's the height of the tourist season and a three-day holiday.  Folks around here take 'staycations," which means they move to a local hotel for a few days. The only room Judy found was at the Outrigger Ohana East.  I would be $300 for the night. Yikes!  By that time, it was after 10 pm, and I had been driving all over Honolulu. I said I'd sleep in the car.  She persuaded me to take it, pointing out that I couldn't sleep in the car overnight.  I went off to find it.

    Lady Gaga's directions were pretty good except for one turn.  Sometimes it's unclear exactly where the turn is.  She will say 90 feet; I think it's the next corner, and then it will quickly drop to 0', meaning turn now.  Sometimes, I miss the turn as a result.  So, when she gave the direction to make a slight left turn, I did. I hit the brakes as I saw two arrows on the pavement, pointing right at me. So, I had to back up into a two-way street at 10 pm in the middle of Waikiki at night. Fortunately, Honolulu is not NYC.  Even though it was a busy night on a main street in Honolulu's tourist district, the cars coming toward me stopped and patiently waited.  No one, and I do mean no one, honked a horn. I pulled into the correct turn lane and made the left hand turn at the other side of that triangle. 

    I saw the hotel and made out that there was a circular driveway, of sorts, in front of it.  It was some small modification of the sidewalk. Only, there was a bus blocking the entrance.  There I sat for another 10 minutes until it moved.  I went up to register, hoping this would work.  It did.

    I asked for a bellhop to take up my luggage because I had so many different bags, and my back was killing me. I actually said, "I may look homeless, but I'm not." I think I looked like a resident of Hawaii.  While tourists were running around half-naked, I was in long pants, a shirt with two sweatshirts and a large scarf, and I was cold. My nerves were frayed by this time.  I got a little testy with the receptionist.  I explained my circumstances to her, Mike being in the hospital and me being in this rather peculiar circumstance.  The bellhop told me the receptionist told him to take good care of me.  He also told me she wanted to see me again.  Off I go to talk to her; what now?  She told me that since I'm Kama'aina (It literally means child or person of the land, meaning someone who is born here or is an established resident of Hawaii),  I was entitled to a discount, and she is going to give me a room upgrade.  

    The bellhop is a wonderful protective man. Any question about what I was doing in a $300 hotel for the night with a bunch of shopping bags is dispelled when they see the shopping bags are all from Kaiser Permanente, the hospital. The bellhop walked me through the building to show me where the parking lot entrance was, and how to get the elevator to my floor. 

    When I got up to the 10th floor, he was there, catching an elevator back down.  When I offered him a tip, he refused.  There are so many people in Hawaii who extend kindness. Mike and I love living here.  

    The room was clean and had typical hotel furniture. If this was an upgrade, I hate to think about what they were offering me initially for the $300.  It was the smallest hotel or motel room I have ever seen, but stuffed into the room was a breakfront with a flat-screen tv on top and a safe and frig. in it, two chairs and a small table.  The bathroom was another super small space.  The shower was the smallest shower I have ever been in, and it was oddly shaped a wedge.  However, it fulfilled my needs.  It was huge compared to the 6 x 8 room  I had been offered at the ashram.  Of course, it was just a tiny bit more expensive. 

    Judy remembered that there is a Catholic retreat center here on the island which offers nice private rooms with bath at a very reasonable rate.  She is going to see if she can get me into the center.  I might have some priority because I am a deacon's wife. We'll see.  The reservation office won't be open until Monday, or even possibly Tuesday since it's Presidents' Day this Monday. It sounds perfect for my needs.

Friday, February 15, 2019

Good news:  Mike continues to be stable. 

    When I asked him how he was, he said fine. When I asked him if he was still in despair, he said no. When I asked him if he was finding his current state of affairs interesting, he said yes.  Halleluiah!!!! 

Mike's blood sugar was 116 tonight.

I learned there are a ton of calories in the TPN, the intravenous nutritional supplement.

Bad news:  This isn't anything new; it's just new to me.  Although Mike's not eating anything for 3 weeks, he has gained 10 k. from his former weight. This is all liquid gain.  Some of the liquid is from his belly; others are from all the IVs he has that are all in liquid form. It is also possible that he is actually gaining weight.  He sure doesn't look like it

            Wow!  I just spoke to the doctor, who is the primary on Mike's case, Dr. Izawa, the surgeon. He didn't present a very optimistic view of the situation.  (Details below in italics.)

    When I got to the ashram last night, my first goal was to get my laundry started.  I had asked to be shown where the washer and dryer were before I Ieft in the morning because I wanted to do laundry when I came home. I had to go outdoors and around the side of the house in my bare feet in the rain, walking on cement pavement and then slippery rocks. 

    When I came home, it was dark.  I got the laundry from my upstairs room and headed to the washing machine.  There were some lights triggered by motion detectors that lit up and guided me part of the way, But, when it came to the stretch in front of the machines, I was dependent on moonlight.  While I could load the clothes and put in the soap, I couldn't see the dials worth a damn.  I went in the kitchen to get some help.  With the light switch on, I could see the dials but the arrow on the dial had faded completely. Didn't do much good.  The young girl told me she just set the dial  'this' way, and it always seemed to work.  Once the wash was started, I went upstairs to watch part of a movie Jean recommended to me, "The Whole Wide World." Lovely movie. An early one of Rene Zellweger.  I went back down to load the clothes into the dryer to be picked up in the morning and went to bed.

    I woke up this morning at 7 am. Note, I slept through the drumming. I had a good night's sleep. Thought to myself, breakfast isn't going to be served until 8:30 anyway, I'll just sleep a little longer.  I did wake briefly when the shofar was blown, first once when the service started and again, later, when it was blown three times, but fell right back to sleep.  I woke up at 8:30 and had to rush.  The residents of the ashram were fasting today because it was a religious holiday, but they had set aside some food for me.  Since I was running late, I got it to go. 

    My first stop of the day was Target.  Mike wanted a clock he could see, and I wanted to look for some thermal pads which can be worn in gloves to help warm his body. Nothing of the sort could be found in the sporting section in Hawaii.  I found some thermal gloves on Amazon.

    I had called to speak to Mike before I left the ashram.  I was told he was out of his room, getting a CT scan.  When I called later, Jeff, a dialysis nurse, answered.  Mike was in the middle of a session.  He didn't want to talk. When I finally got there, he looked kind of out of it. 

    I was going to need help hanging up the clock because I wasn't tall enough to reach as high as I needed to, and I don't think they wanted to see me on a step-ladder.  Jeff, the dialysis nurse, helped me out. To hang up the clock, I bought some hooks by Command that can stick to a wall without damaging the paint.  I bought two sizes. Neither worked, one was too small, and one was too large for the hole in the clock.  Jeff went out and got a large paper clip, made it into an S-hook, put one end into the back of the clock, and hooked the other end over a whiteboard attached to the wall.  Perfecto!

     A deacon candidate, Marlo, visited, He visits once a week. It is much appreciated.  He was there when Dr. Izawa spoke to me about Mike's condition and what his plans were.

       Dr. Izawa's report wasn't very optimistic.  He says that the CT scan which was taken this morning shows no change in his condition.  It is unlikely that his body will be able to heal itself because of his kidney condition.  His end-stage kidney failure means that he cannot remove fluids from his body on his own. He has actually gained 10 kg from the time he entered mostly from fluid retention, they believe. This does not show up in his ankles; it is all in his abdomen.  

    The dialysis removes fluids, but not enough. They can't pull out fluids too fast because his blood pressure is too low. Also, he is receiving tons of fluids intravenously.  Everything is in a fluid form. I asked if they could increase the amount of dialysis.  The doctor said that the dialysis was stressful on its own and didn't recommend doing it more frequently.

    If his condition continues to remain the same, they will have to operate. This introduces additional risks.  To begin with, he will probably have to have multiple operations. Second, any and all operations almost guarantee to introduce bacteria into the abdominal cavity and cause an infection. 

    I would describe the doctor as modesty pessimistic. The hospitalist, a replacement for Dr. X, is a woman from New Jersey.   She confirmed Dr. Izawa's pessimism.  She said, and I agree, it is better to be realistic.  What a lovely surprise it would be to have Mike come out of this in wonderful condition. I hope to get another 10 to 15 years out of him.

    The good news is that he is sure there is no infection. It would show up as bubbles on the scan. But, if there continues to be no change, they will have to operate. He can't remain this way forever. 

    After talking to Izawa, I was devastated.  I called Damon and told him what I had learned.  I think the whole family has to come out before the operation, since this procedure may lead to other complications, and possibly death.  Tom, the pancreatitis survivor who contacted me, said he has multiple operations.  It sounds like his path was very much like Mike's.  He said he wouldn't be alive today if it weren't for his wife's efforts on his behalf. I don't know what she did. I'm going to have to find out.  I still find my primary role is arranging to make him more comfortable and listening to him complain.  However, today I really did intervene medically.  A lab tech came by and wanted to take blood. Mike was in the middle of receiving a blood transfusion.  I pointed it out to the tech.  He said he would come back later.  Again, I have no idea how people deal with a situation like this without an advocate by their side most of the day. 

    Mike generally is not open to the mind/body connection.  In our early days, he actually made fun of me for holding this belief. But he made fun of anyone who held a different opinion from him. He was so calm and somewhat flippant as he spoke that I actually thought he was joking.  I was shocked when I found out he was seriously putting people down.  I called him "an equal opportunity arrogator" because he didn't discriminate by race, creed, age,  or gender.  I knocked that out of him.  I have a low tolerance for arrogance. Not sure quite why this is such a bug-a-boo for me.  The expression is, "If you want to know who and what you really are, see what you project on to others." While I don't see arrogance in most people, when I do see it, I want to run for the hills. 

    Now that Mike's desperate, he's open to my suggestions.   He complained again that he had to pee.  The nurses always come and place a urinal. He can never pee,  but the action of placing the urinal seems to give him some relief. I believe the Tylenol does provide him with relief from the constant feeling that he has to pee. The nurse, Tim right now, came in to give him that.  Mike commented that Tim was a nice man. He's cheery, and he looks somewhat like Elijah, B's grandson.

    I decided to try a visualization with Mike.  I was wary because this is a little far out, not just for him but for me.  I use visualizations to activate the mind's and the body's capacity.  In this case, the body has no ability to reduce the liquids in his abdomen.  I tried the following visualization. I told him to picture a tube into his abdomen which drains into the shower pan six feet away.  When I asked him if it gave him some relief, he said a little.  Well, I'll take that.  Then he started complaining again.  I asked him if he was focused on the tube coming out of his abdomen or the  discomfort in his bladder.  He said the bladder.  Since there is no liquid in the bladder, that's a dead end.  I told him to focus on the tube from his abdomen.  He did and said it made him feel somewhat better.  Not even I'm enough of a believer in the mind/body connection to have confidence that this will work. But, if it makes him feel better, I'm all for it.

    Before I left, he suddenly looked awake and alert.  He had been aware that I was upset by what Izawa had said, and he wanted to know what it was. I told him: his body either drains the liquid on its own or he has surgery.  Izawa wants to wait another week.  Mike said he wants the operation in 24 hours. I think he has a point.  If there has been no reduction in the liquid in his abdomen for the last three weeks, what makes the doctor think another week will make any difference?   Mike asked to speak to Damon.  He said he didn't want anything to happen without Damon's input.  Both Damon and Mike understand the Izawa is being conservative.  A week from now, Mike may only be weaker and more vulnerable in a surgical procedure, and less able to fight off infection if he gets one.  Mike says doing the surgery now is a no brainer.  I can see his point. 

    Izawa says that going the surgical route is opening up Pandora's box. It will lead to more surgeries and all sorts of possible infections. He feels surgery is a last resort.  His point of view frightens me.  Of course, there is always a possibility that he won't get an infection. Izawa made that sound unlikely. Oh, boy.

    I went upstairs to the cafeteria, warmed up my left-over short ribs, vegetables, and rice.  It was delicious and so tender – and still good. 

    I left around 6:30 after working to convince Mike to try the visualization. Heavens knows, there is nothing objective, scientific about a religious belief.  If you can pull that out of a hat, why can't you allow yourself to believe that the mind can change the way the body functions. I told him that I thought most religious beliefs were fantastic, but since I drew comfort from them, I allowed myself to believe in them. I see it as 'not allowing the left hand to know what the right hand is doing," almost literally.  The right hand connects to the left brain, which is logical.  The left hand connects to the right brain, which has no such expectation. I literally give permission from my left brain for my right brain to believe things my left brain could never cotton to.  I monitor my right brain beliefs with my left brain to see that no harm is done to me or to anyone else. That is the pitfall of organized religion and nationalism that my parents taught me to fear after their experiences in Europe, specifically Germany, during WWI and WWII. My parents taught us to shun all forms of organized membership, even the Girl Scouts, as dangerous activities leading people to war against each other.

    When I got back to the Krishna Ashram (how's that for a segue), the temple was lively with people singing and dancing, their form of worship.  I went directly to the dining room, ate a little bit of dinner since I had had a substantial lunch.  I joined one of the regulars, the only other person in the dining room at the time. Then two fellows I had met two days ago over dinner came in. They're both in their 20s, roommates.  Jamie is half Hawaiian and half-Pilipino, and Heri is from Bulgaria. They met when Heri answered an ad on Craig's list for a roommate.  He lucked out with Jamie. Jamie provided him with work and friendship. Heri is here on a student visa, and attends a community college.  He is working on a degree in linguistics in his own country and speaks a number of languages including Russian, English and a few Scandinavian languages. These boys come waltzing in and Jamie presents me with a bouquet of flowers. I'm stunned.  These boys aren't Hari Krishna's; they just come for the delicious food.  Jamie looks a little like Tiger Woods.  I will take the flowers to the hospital tomorrow, and tell Mike that I have a secret admirer who I think might be Tiger Woods. Mike's not the jealous type, so it might be a good joke. 

    One friend said to see if Mike was getting anti-anxiety medication. Thank you, thank you for that suggestion.  When I checked, the nurse told me the prescription was for 'as needed." I have no idea who made those decisions.  I don't believe he has had any since he got off the Fentanyl. I suspect it's been up to me, and I didn't know it was an option.

    Another friend suggested books on tape.  Mike says he can't concentrate enough to deal with much.  His body sensations are flooding his mind.  He can barely tolerate music.  Even with that, he can't tolerate his usual favorites: the three Bs.  He can only tolerate soothing music for moderate periods of time.

Thursday, February 14, 2019

Good news: Mike's condition is holding steady.

Bad news: He is increasingly desperate for his condition to change. This is a brutal physical, and spiritual journey. His blood sugar count was 124.  The limit is 120, so he received an insulin shot.

    Last night I snuck some meat into the ashram.  I took it to my room and put it in the refrigerator that's there.  Since they run a Bnb, I assume they can expect people not to be strictly vegetarian, but I didn't dare ask.  

    When I went down to breakfast, I discovered that breakfast wasn't served until 8:30, once the morning meditation was over. Up to now, I have been assuming breakfast was set out at 6 or 6:30.  I had to wait for 15 minutes. I sat with Abby, a convert to Krishna visiting from England. She's a little flaky.  Most of the folks there aren't.  I think she is the youngest one.  Most are middle-aged. 

    I asked Abby how a temple member named Steve was doing. He's been in the hospital in an induced coma. I'm not quite sure why he was there in the first place. She told me that there were 20 people in his hospital room singing Hare Krishna to him.  If he died, it would be a beautiful way to leave this world.  If he survived, he would have a wonderful memory. I'm thinking: those poor nurses and other patients. Unless this man has a wing to himself, the whole floor must be reverberating with these folks' voices. 

    It is 'freezing' cold here, meaning it is in the low 50s, and people are bundled up. I have a shirt and two sweatshirts on at all times.  

    Hare Krishna's 'take care' of their deities.  I asked one of the women what that meant.  She said they wash them,  dress them, and feed them. They have an incredibly life-like statue of their guru, who brought this sect of Hinduism to the US.  He had a wool hat on today. 

    After breakfast, I set out to find a Safeway.  Thank you, Lady, Gaga for making travel in an unfamiliar place doable.  While I started out looking for a Safeway, I found a Long's Drugs, which was even better. I was looking for the eye wipes Sandor and Meaali'inani, the optometrists, had recommended.  I also needed some Salon Pas for my strained back.  Yah, I did something to when lifting Mike's leg up in the air.  I can't believe how totally limp his limbs are.  He doesn't have the energy to help me at all.  I also got some Tylenol and KT tape. Then I picked up some Hersey's with almonds, my go-to dessert these days.  They were on sale; two king-sized ones with whole almonds. Yum.

    Whenever I buy chocolate candy, I think of a conversation I had with my mom in the 70s.  I called her. She declared," I'm so depressed." Now, this was not my mom; we didn't discuss emotions. "Why, mom?" I say in alarm. "Oh, A&P had a sale on Cadbury chocolate bars." "Yeah?"  "I bought three of them." Yah?"  "And I ate all of them. I'm so depressed." 

    When I arrived at the hospital, I saw the merchants who set up food tables with local foods as they do every Wednesday. It's pretty amazing.  I got down there late, and nearly all the tables were packed up to go home, except this one. They had short ribs and vegetables with rice. I grabbed it.  Because it was their last serving, they heaped my container up way beyond what I would be able to eat in one sitting. My intention is to eat what's left for lunch today.  I hope it's still good. It's so cold out, it barely needs additional refrigeration.  If not, I'll toss it and buy a sandwich at the food stand that is there every Monday through Friday or go to the hospital cafeteria.  The cafeteria food is good, but again, they give too much.  Many of the folks in Hawaii are supersized.   Think of Israel Kamakawi' Ole, the guy who created that incredible version of "Somewhere Over the Rainbow." (If you're not familiar with it, find it on YouTube.) Maybe not quite as fat as Iz, but that general direction.  I see a lot of it here at the hospital. 

    I had called Mike before I left the ashram.  A nurse who was with him said, "He doesn't want to talk to you now; he is having dialysis.  Call back later" I thought that's pretty funny. It sounds like he can take care of himself.

    When I got to the hospital, he was crying, "I give up!  I give up!  This is no way to live." At some point in the morning, he actually asked me to end his life.  I laughed and said, "No way. I'm looking forward to meeting the person you are going to be when you come out of this experience.  If we were traveling in Europe, you wouldn't be reading and working on preparing for teaching. You'd be taking in the sites and learning from what you see. This is a different kind of journey, one you didn't plan for or ever want.  But you're stuck on this journey. Learn as you go along as you would with any other journey. Learn as you go along!"

    I remind him of all the academic subjects he has studied, which have addressed this very problem.  In philosophy, he has learned about the Existential prison. We're all trapped; we have to make our peace by accepting the world we are born into.  (Now, this doesn't mean fatalism, were you accept unpleasant conditions you can change.  Think of the serenity prayer. Or my uncle's version of the army clean-up philosophy of life: move everything that can be moved; what you can't move, paint green and call good. I suspect I've mentioned this last one before.) Mike had studied Loyola; he is currently studying to be a certified spiritual director at the Mercy Center in SF.  Yes, this is his 40 days in the desert. Hopefully, it is no more than 40 days.

        Although this morning, when I asked him if the fact that I loved him was helpful, as he was wresting with his despair, he said, "No!!" Then I lectured him, telling him that he can't kill himself here.  If he pulls anything out, he'll wind up back in the ICU, intubated and tied down.  That will be worse than now. When I asked him if I'm a tough broad, he nodded yes.  When I ask him if that's a good thing, he nodded yes.  I believe that most of his rants are just complaining so he feels he is doing something about his condition.  There really isn't much else he can do.

    I have made it clear to Mike that he can hoot and holler as much as he likes.  He can even run wanting to die past me periodically. I'm good with all that.  He really has no control over his own life.  His situation is miserable, and he doesn't even have a clear-cut enemy to resist against.  Except for a jerk here and there, he is surrounded by kindness and good intentions - and yet he suffers.  

    I hoped this morning and continue to hope that his 'giving up' is a good sign, a letting go of control and expectations that his body do what he thinks it should do without being asked or attended to.  When I first heard him cry, "I give up!" I thought yeah, we're making progress.  Giving up is the first step to acceptance and peace.  When I do work as a healer, I often get the image of someone just sitting down on a curb in resignation.  I call it the "Oh, shit!" moment.  I have found that for others as well as myself, it is the start of a dramatic upturn in . . .. .  I don't know what to call it.  It isn't a change in a person's fortune, because it isn't external.  I think it is just that we stop pursuing something we think we want and look around at what is.  I find such moments amazing experiences.  Very healing.

    So, the bad news is that he's had it, but the good news is that he is glad to hear me read the cards people send, he requests a bath and a shave, he says it is good that I am tough with him and it helps that I tell him he is truly suffering and he's not exaggerating his condition.  I can't wait to see who he will be when this is over.  His own spiritual development should be off the charts.  I am excited about this outcome.  I look forward to his sharing his deepened spirituality with one and all.

    Today, he asked to listen to Beethoven.  I got the 6th on YouTube.  I became too much for him.  I think he found it overstimulating. I put on some soothing music instead.  He never complained about that.  I remember that his first night out of the ICU and in telemetry, he had a nightmare about Beethoven. Sounds right to me.  The man's life was a nightmare.

    Today cards arrived from Amy from Licking Heights, Dorothy, my sister, and a package Judy Chapute, with something for me thrown in.  Having some concrete knowledge that we are in your thoughts is helpful to me, and to Mike.

    This morning the hospitalist on duty, Dr. X,  walked in the room, looked me straight in the eye, and said," Do you remember me?"  "No."  "Well, I'm hearing you are complaining to the nurses that you are not being fully informed. Do you remember the conversation we had a week ago?  I told  you that your husband had pneumonia." The conversation went on in this vein.  

    I was irate because why would he expect me to remember him or what he said to me.  He even told me that when he was updating me, I told him," No, more.  I can't absorb any more information."  

    I don't know what the good doctor is about, but his manner of approaching me was totally inappropriate.  If he said to me, "Hi, Mrs. Ross. How are you doing today? "for starters, that would have been good.  If he said, "I want to talk to you about your husband's condition," that would have been good. Instead, we had a long discussion about my inability to remember him and what he said. 

    He made a point of telling me he had fully informed me. Since he said there were "complaints!" I asked him how many.  He said there had been two. I know of one incident that would fit this description.   I don't know what the other is.

    One I remembered, besides being told he had was suffering from respiratory failure, was the morning I called the hospital and was told that my husband was back on the bi-pap breather.  I was shocked by that.   Yes, it said on the board, nasal cannula and bi-pap as needed, but I don't really know what that means, or even really pay attention to it.  I just know that he was on the bi-pap in the ICU, and this doesn't sound good.  

    When I get to the hospital, I ask a nurse why he is on the bi-pap. I was alarmed, and she reacted to that alarm.  No, I did not scream. She said something and then blurted out, "He has respiratory failure," as if I should know this.  I pointed out to the good doctor that while I understood he had aspiration induced pneumonia (means he inhaled something into his lungs he shouldn't have and his lungs are flooding with liquid to get it out),  I didn't realize this meant respiratory failure.  

    The good doctor seems to think I should know what all the medical jargon means, be able to understand it from what he has already said. Oh, boy.  I pointed out to him that I was under enormous stress at the time he talked to me a week ago. I still felt like the inside of an ashtray after a whole night of smoking.  I signaled my stress by telling him I couldn't absorb any more information. I pointed out that I was in shock and the grieving party. I actually said grieving widow since Mike still has only d a 50-60% chance of living, and at the time in the ICU, it was even less. A gentler approach would be vastly more appropriate.  

    He repeated, "I just want to know if you remember me." That put me over the edge.  I said, "Do you have any idea how many doctors, nurses, aides, cleaners, etc, etc, I have met in the past week? Why should I remember you? Are you that special?" Those of you who know me well can imagine my gesticulations.  He said, "I can get you another doctor." I think I had already told him I was going to complain about his manner with me.  I called it an assault. That perked up his ears.  

    I have no questions about his medical competence.  He suggested that Mike not get the CT scan today because the dye needed could cause some damage to the kidneys. He talked about scheduling the CT scan for Saturday right before his next dialysis treatment.   The dialysis will pull the dye out of his system. That sounds like a great idea.  

        Mike seems to have enjoyed the battle royal. I was concerned that it might add to his stress because he hates to hear people fight.  If I'm sharp with someone, he says, "Be gentle!" I turned to him after the good doctor left and asked, "Was that  fun?" He nodded yes with a big smile on his face. While he is increasingly tired, he is still aware of what is going on around him.  He knew exactly what was happening.

    There are some losers here who have no idea how to relate to people who are in distress, both patients and their loved ones, but for the most part, people here are fantastic.  One dialysis nurse just sits there and watches her computer; another will be sure Mike is comfortable. Today's floor nurse remembered my instructions to put the lamb's wool socks Dorothy sent on Mike's during dialysis before I arrived. An aide knelt down and put socks on my cold feet.  I can't reach my left foot to wash it, scratch it, or put on a sock or shoe. The dialysis nurse today placed my Salon Pas patch on my aching back.  Some nurses and aides turn him regularly, wash him regularly, check on him regularly, and are quick to get there when one of the bells goes off, indicating an infusion is done or blocked.  Also, the doctors, for the most part, with the glaring exception of Dr. X, are kind and considerate.  

    The physical therapist came in and assessed him and gave me advice on how to work with him.  Her first piece of advice was "RAISE THE BED!" so you don't have to bend over. Wow! Who thought of that?!  Probably wouldn't have the backache I have now had I thought of it. She went through range of motion exercises and some light strengthening exercises.  He could do much more than I thought he could. She showed me how to do things in a gentler way than I was doing it, and others in a more strenuous way.  She was sweet and looked just like our Aya from church. 

    As I'm preparing to leave, I asked Mike if he knows that I love him. He said yes.  Our usual good-night drill is, "Do you know that I love you? ""Do you know I adore you?  Do you know the best part about you?" He says yes to all three questions;  the answer to the last question is that the best part about him is that he is mine.

    He complained he had to pee again. I went out to get the nurse, telling her that I thought he needed more Tylenol.  I am associating his need to pee now with general discomfort that can be predicted by his last dose of intravenous Tylenol.  The nurse came in to talk to him.  Asked him what was bothering him.  He mentioned that he was cold all the time, and he couldn't get up.  He didn't say that he had to pee but couldn't and was hungry but couldn't eat.  I wasn't so calm when she was asking all those stupid questions instead of just giving him the damn Tylenol.  I was afraid he would say that he wasn't in a lot of pain.  But he said his pain level was at a 6 out of 10.  I would think he would have a new definition of pain after his experience with the onset of pancreatitis. He described that pain as a 30 on a scale of 1 to10. 

    As I am about to leave for the night, he cries again, "I give up." Hopefully, he is surrendering and finding acceptance of his condition. I can handle his cries of, "I give up," even "Help me!" and "Fast. Somebody do something fast!' But when he says, "Don't leave me alone," when I have to go to take care of myself, that's hard.

    The closing act tonight was something else. He said, "I'm not a person anymore." Boy, did my wise witch kick in.  I told him he is always a person, no matter what condition he's in.  I told him he thinks his personhood comes from his academic skills alone, who he is as a learned man and a teacher.  I gave him a piece of my mind.

    I reminded him that other aspects to him are worthwhile developing. I quoted, misquoted, part of a poem by Yeats that I said at David and Carolyn Tilove's wedding. 

   

Some men loved her for her fair face.

Some men loved her for her glad grace.

But one man loved her for her pilgrim soul

And the thousand faces of her changing moods. 

(Misquote credited to a college roommate of mine, Carol Barter. )

    I said you love me for my pilgrim soul, don't you?  He nodded.  I love you for yours.  Find your other parts.  

    I asked him if that was interesting.  He said yes.  I kissed him once more on the forehead and headed to the ashram.