Saturday, February 23, 2019

Good news: Stable. Able to breathe spontaneously for a short time while still intubated.

Bad news: Stable, no real positive changes.

ˆ    Before I say anything else, thank you to all of you who have sent cards.  

   

    The bed in the ashram was reasonably good.  My back wasn’t worse for sleeping on it, and lying down relieved the pain.   I woke up around 8 am and spent some time rolling around on a tennis ball to help my back.  I discovered that I got more relief applying the ball to the right side of my spine even though the pain is on the left side.  When I was up, showered, and dressed, I had breakfast out on the grounds of the ashram.  Very relaxing.  Then I went to the hospital just to have some contact with Mike. I don’t know if this is true, but I believe his circadian rhythms are set to my coming and going.  I get there in the morning between 9:30 and 10:00 and leave around 6:30pm.  I am his clock.  

    I had called the hospital at 8:30 am, right after the shift change was complete, to see how Mike was.  They told me stable.  The story was a little more complicated when I got there.  They had tried to reduce his dependence on the ventilator. They can set the ventilator to breathe for the patient, or they can let the patient breathe on their own with the tube still down their throats.  They made a spontaneous breathing test.  He did reasonably well, and so they tried to leave him to breathe on his own.  His breathing became very rapid, and they had to put him back on supported breathing. When he was in the ICU before, he actually pulled the intubating tube out on his own. Apparently, this is not uncommon.  It has to be a pretty uncomfortable feeling.  Fortunately, he had been breathing on his own with the tube in, and they were planning to take it out the next day if he continued doing well. Since he was able to breathe on his own, they left it out. Who knew it could be so complicated?

    While I was there a respiratory therapist in training, this adorable young woman, Augustine, came in to work with Mike.   She was the one wrestling with adjusting his breathing apparatus.

    The ICU doctor came in too, Dr. L., who I don’t think likes to deal with relatives of patients. I asked him if he knew if the second tube draining his abdomen was, in fact, successfully removing anything from his pancreatic sack.  I wondered if there were any amyloids in the liquid.  He corrected me with an obvious distaste for my ignorance.  Apparently, the much sought-after material is an amylaid, not an amyloid, if I have it correctly yet. Arrogance is very difficult for me.  I thought they could just pull fluid from the drain bag and test it.  He suggested it would be a more invasive procedure than that.  He also thought I was telling him what to do instead of asking him for information.  This guy has a few problems.

     He then proceeded to tell me that Mike was a very sick man with a very difficult to treat disease and left me with the impression that there wasn’t much to hope for.  While I am aware of the possibilities, it still hits me hard every time I hear a doctor say it outright. This wasn’t a man who has a lot of patience with unhappy family members.

    It is absolutely true that there is not much they can do for him other than keep him alive and make him as comfortable as possible with some hope that his body will do what it has to do.  They avoid aggressive steps because each one has its own risks.  But to not take those risks creates another set of risks.  Again, Tom’s story about his battle with pancreatitis gives me some hope.  Without it, I don’t think I could have any.  Mike is one sick puppy.

    We were told that the only risk factors for pancreatitis were: alcohol consumption, high triglycerides, and a traumatic injury.  Mike had none of those factors.  They were thinking that it was one of the drugs he had been taking, which sometimes causes it on an off chance.  Tom’s was trigger by gallbladder surgery; he had a gall stone.  This could be considered a traumatic injury, even if it was medically advised. Dorothy found that the various treatments of kidney disease also can cause this problem. The PD (peritoneal dialysis) has a higher chance of causing pancreatitis than HD (hemodialysis dialysis) does. Mike has been on HD since November.  The one thing we can be grateful for is that he is no longer using the fistula to receive dialysis.  This came about because the last donor had to drop out.  Mike was about to go on a week-long trip to the mainland and Oahu when I learned this, and I didn’t tell him before he left.  Instead, I went to work on alternatives.  The PD was too far away; the doctor recommended that he have an HD port installed immediately.  If he was still wrestling with the fistula for an entry for the HD needles, I don’t think he would even want to live. Apparently, his veins are too small to make this a viable option.  Every time they tried to do the dialysis, he was in terrible pain.  I didn’t even realize how much until the day he came back from dialysis, having used his new port.   What a difference!

    I left the hospital, I went to the Ala Moana Mall to meet the gang, Damon,  Cylin, August, Jean, and Dorothy.  Holy cow! It’s the largest mall I’ve even see.  The mall parking lot rival airport parking facilities.  And it has some of the fanciest stores I’ve ever seen and some I’ve never heard of. It’s like walking down 5th Ave. in Manhattan.  Dorothy commented, “crazy rich Asians.” I think that’s their desired clientele.  

    Damon and August were wrestling with my broken phone.  They had initially wanted me to buy a new one.  I remembered that I had Mike’s with me.  He wasn’t going to need it immediately, so I charged it the night before and brought it in.  I met everyone at the Apple Store. August did all the work.  He exchanged the sim cards.  Only one problem: I couldn’t download all my information to his phone because I don’t know Mike’s password. Not only is he not in a position for me to ask, he probably wouldn’t remember it anyway.  I can’t remember my passwords from one minute to the next. It might be a good idea for all of us to have a record of our passwords in our regularly updated wills. 

    While Damon and August worked on my phone and Jean’s Powerbook, Dorothy, Jean, and I went shopping.  Jean needed a bathing suit and a light sweater for the freezing cold of the hospital.  I wear at least one sweatshirt and sometimes two and a scarf to keep warm.  Mike’s room in the ICU has one wall of windows, and the sun does a nice job warming part of the room.  

    Dorothy bought bananas for her and me, and I bought some wipes to clean my glasses.  I do need some other stuff, Dove soap and, of course, more Hersey Milk Chocolate with whole almonds. Although, I find my appetite is so repressed that I can’t finish an entire bar in one sitting right now.  I’m sure things will improve with time.

     In preparation for Mike’s sister’s, Randy, arrival, to give her time with him alone without me around, I went with Dorothy to show her the ashram.  It is lovely and peaceful there.  The community has created a spiritual space.  Also, there is this huge banyan tree on the property.  Dorothy took a picture of me in front of it and had me take one of her.  The main house was originally a mansion.  I was told it was built by a Japanese family.  I suspect they were Buddhists and planted this tree because it is under this type of tree Buddha is said to have attained enlightenment.   I tried to Google banyan tree-Buddha (also called a Bodhi tree), so you could get some idea of what it looks like, but I couldn’t find a single image that would give you an idea of how this particular one looks.  The one at the ashram is much larger and broader than any I saw on the Internet.  When Dorothy was standing under it, it dwarfed her.

    Govinda, the manager, came by as we were sitting in the garden.  I said, “Guess who this is?” pointing to my sister.  We are sometimes taken for twins, although we don’t share a single feature.   We left from there to go back to the hospital.  Dorothy and I sat quietly, me typing up Friday’s log and her playing a game on her phone, or the two of us occasionally talking quietly.  It was delightful. I hope the vibes we were creating were also pleasant for Mike.  He likes it when I’m comfortable and happy.  

    Damon texted us and told us to be at the hotel around 7:30 pm. Dorothy and I left the hospital around 6:45.  When we got to the mall parking garage, we both discovered that neither of us had properly noted where we were parked because we were talking.  We started on the 3rd floor with no luck.  We finally found the car on the fourth floor.  

    The trip to the hotel went smoothly; I was able to drive a lot faster than 9 mph.  I had some trouble with the Pay and Park parking box.  I wound up paying twice.  Okay, it was a mere $8 total.

    This was the first time I would see Randy, Mike’s sister, in a long time.  We have some interpersonal difficulties, and I’m not very comfortable with her.  We all ate together around a round table. Randy and I made a point of not sitting together.  Unfortunately, her presence still wore on me.  My back was killing me throughout the whole meal.  I’m sure there were other factors as well: couldn’t find my Tylenol, and the chair wasn’t ideally suited for my back problem.  I went home around 9:30.  Damon and Jean walked me to my car.  There was stuff in the back that Cylin had left that she had bought that day. She needed a pair of shorts for August.  She had packed for him on Thursday while he was at school, and she forgot to pack shorts for a trip to Hawaii. Fortunately, she didn’t forget his bathing suit. The Prince Waikiki  Hotel has a great swimming pool.

Friday, February 22, 2019

Good news: He's stable, and there is no sign of infection in the abdominal area.

Bad news: No significant change, and there is some sign of possible infection in his lung area, pleural sack, I believe.

He has had two more interventions: a Foley catheter and a gastric tube into his small intestines through his nose, bypassing his stomach, and avoiding triggering responses from his pancreas.  Pretty sneaky.

   

    This was moving day for me. I had to move from the hotel back to the ashram.  They had room for me again. I loaded up my luggage and was out of the motel at a reasonable hour. I wanted to go to Costco to get gas.  The gas warning light beeped went on while I was trying to get there.   It was a new route, and Lady Gaga was confusing me.  I don't have any idea where I went. I resolved to follow her to Costco or stop at the first gas station I saw. I've had that car for over two weeks, and it just now needs gas.   I found an Aloha gas station; (Yes, we have a gas station named Aloha.), fueled up, and set Lady Gaga to get me to the hospital. 

    They told me this morning that when they scanned his abdominal area, they indeed found some urine in his bladder. That's both good and bad news.  Good news because it means his kidneys are still functioning at some level, but certainly not enough to keep him alive without dialysis. Bad news because now they have put a Foley catheter in him permanently. 

            The nurse also told me that they put him back on a blood pressure drug that they had taken him off. His blood pressure was dropping again.  

    Damon, Cylin, and August arrived around 10 am. Mike's room has a door with a glass window.  I went in and told Mike that Damon was here to see him.  Damon went in first and spent some time with him.  Then Damon brought in Cylin and August separately. It's rough for 15-year-old August to deal with seeing his grandpa in this condition. They left to have lunch while I sat with Mike.

    An infectious disease doctor came in and gave me the information that the bacterial cultures from his abdomen show no sign of infection. That's incredible.  Very hopeful.  However, an infection can start at any time. He does, however, have some bacterial something in his lung area.  When all these tubes were inserted, they preemptively threw every antibiotic at him. This way, any bacteria that might have tried to grow was suppressed.  It is still possible that they will rise up in protest and win the day, leaving all of us who love and value Mike the losers. The doctor determined that there was one antibiotic that she was giving him that clearly had no function and took him off it.

    Damon plus two drove with me to the ashram.  When we got there, Damon kept saying, 'This is incredible.  This is perfect for you, Betty." I am in a cabin with three beds, one is bunk bed. It's not the elegance of the Prince Waikiki, but it is perfectly functional – and it has a bathroom.  Damon promptly broke it in.   I could see he was relieved that I was staying somewhere comfortable.

    As we were walking across the grounds, I spotted my friends Jamie and Hari. I met them over dinner at the ashram. They are not Krishna's; they only frequently eat there.  Jamie is the one who brought me flowers.  Lovely.  I sat down and with them while Damon, Cylin, and August carried my belongings into the cabin.  I finally also got myself something to eat.  It was so good to be sitting in the sunshine in beautiful surroundings.  I was reenergized.  

    I stayed a while longer at the ashram, enjoying the surroundings while D, C, and A caught an Uber and back to the hotel. Damon's mom, Jean, and my sister, Dorothy, were arriving today from New Jersey.  

    Mike's road is very rocky. We never know when some bump will be his last.   Everyone wants to say hello, and if necessary, good-bye.  Dorothy texted me, remembering how Mike helped her straighten out her checkbook close to 40 years ago. Mike has touched all our lives.

     The medical team is looking out for infections in a big way now. This is the next big hurdle Mike must pass through. They would not do another bacterial culture.  They would be looking for other signs of infection: drop in blood pressure, high white blood cell count, and a high fever.  There may have been a fourth criterion, but I'm too tired to remember it. The infectious disease doctor pointed out that since Mike does not have a compromised immune system, his body will respond to an infection appropriately by turning up the heat. 

      I think everyone would be in despair now if it wasn't for the information Tom Wnuk gave us about his trials with this disease: 5 months in and out of hospitals.  He detailed all the procedures he went through.  They sound a lot like Mike's.  Tom is out there to say, "There is life after pancreatitis."  We're all holding on to that glimmer of hope.  The doctors have told us it would be an up and down journey, but hearing that from someone who went through it and survived feels very different. It alters our perspective.  

    Here are the other interesting developments of the day.  Mike has been put on a feeding tube that bypasses his stomach, thus avoiding exciting the pancreas into action. Irritating the pancreas is still a concern.  This means he will be off the TPN, which is the intravenous nourishment he has been receiving.  Things are so bad, I almost referred to the TPN as food.  I doubt you will ever find it on any restaurant menu. Just as well. They gave him Propofol to keep him calm and put him back on Fentanyl to deal with the pain of the Foley and for the pain of the procedure.  I hope he's up somewhat tomorrow.  More family is coming on Saturday; Mike's sister is coming in.     

    Since they didn't do dialysis on Thursday as they planned, they did it today.  He was asleep for much of it , or at least not anxious. Of course, he is on Propofol, the drug that killed Michael Jackson. It's an antianxiety drug that doesn't make you sleepy. The dialysis nurse was not one of my favorites.  She stares at her computer the whole time and pays no attention to the comfort of the patient. As she was about to leave, I said he needs to pee. She is standing between me and the door and said, "They just cleaned him up." I said, "Get out of my way!" She giggled and did. I went to get the nurse and get help for Mike. 

    Cylin, my daughter-in-law, had Propofol when she had some eye-surgery.  She said it makes you lose your inhibitions.  She thinks she was singing during the procedure.  I realize now this drug may explain some of Michael's behavior the other day when he returned from having the first tube put in. His celebration of the reduced pain was joyful, but his complaints about some other pain were not so welcome.  If I had been told that his unusual behavior wasn't just a result of his relief, I wouldn't have reacted as I did when his complaints started.  I told him to can it.  He was yelling about a discomfort just as loudly as he had yelled about the initial stage of the pancreatitis attack in the emergency room in Kona.  

    The respiratory therapist came in while I was here too.  She said they are going to reduce his respiratory support.  She put him on a spontaneous breathing trial, which means he will be breathing on his own.  If he does this successfully, they can move toward extubating him. This is a step in the right direction.  I asked if extubation means he can get out of the ICU. She said it was only one step in the process.  There were still other criteria.  There is no question that at this point, Mike is being kept alive by medical intervention. Two more tubes have been added today: the Foley catheter and the feeding tube. 

    I left the hospital a little earlier this evening. Damon called from the Prince and said dinner was poolside, the only eating place with any openings left.  I had to be there by 6:30.  While I left promptly at 5:45, the traffic was running at 5 to 9 mph.  When I told Damon that had been my speed, he said, "Oh, you were being careful." No. Driving 9mph when everyone else is driving 45 is just weird.  No, that was the speed of the traffic during rush hour in Honolulu. It is one of the joys of living here.   

   The poolside menu wasn't great, very limited, but the view of the sunset was spectacular.  Mike and I get something like it every night in Kona from our lanai.

I find I appreciate them more over time.  And then, and then, once it was dark, there was this spectacular firecracker show; apparently, there's one every Friday night.   I left for the ashram and my first night in the cabin.

Thursday, February 21, 2019

 Good news: He’s stable.

Bad news: No change.

    Sorry, I didn’t do any writing on Thursday. I’m writing this on Friday, so I don’t remember all the details. I believe it was a day of the same from beginning to end for Mike. He was awake and often complaining,  I was trying to write up Wednesday’s log.  So, it was up and down for me for much of my time here.  The whole day was pretty exhausting.  I was so tired. I fell asleep in one of the chairs.  None of them are terribly comfortable, but I seem to have a talent for falling asleep.  I placed a pillow under my hips, so my back wasn’t curved, and another chair to support my legs. That worked out well.  When I got up, my back wasn’t in worse shape and may have been slightly better.

    Damon, Cylin, and August arrived in the late afternoon.  I joined them for dinner at the Prince Waikiki restaurant.  It was a pleasant break from my usual routine. Then I went back to the hotel.  I spoke to my friend Judy all along the way.  She’s my new mother; I have to check in with her to assure her that I arrived safely and am okay. 

    Dorothy, my sister, and Jean, Damon’s mom, would be coming in tomorrow, and Randy, Mike’s sister, on Saturday. 

Wednesday, February 20, 2019

Good news: He's still alive.  They are reducing life support as he gets better. 

Bad news: He is still heavily sedated. They are waiting for bacteria cultures to mature to determine if he has any infections. If he does, it will be very serious.

    The room at the cheap hotel was somewhat of a surprise.   The room is right off the driveway, the bedroom area is 10 x 10, the bathroom is just about as large.  But I adapted readily. I used to take a long time to adjust when we traveled.   Now I'm doing great.  But the purpose of my travel is constant; I'm at the hospital 8 hours a day.  Where I stay is irrelevant.

    I had trouble sleeping, too busy making funeral arrangements. The doctors and nurses at the hospital were conservatively pessimistic about his chances of surviving the night. When I left the hospital, he was alive only because he was on life support.  He was intubated, he was on high doses of blood pressure medication, he was on intravenous nutrition, you name it.  I spent the night writing a eulogy and planning the funeral. I want to wear bright colors for his funeral.  I want everyone to wear bright colors. It should be a celebration of his wonderful life. In the eulogy, I shared with the congregation how our four years in Hawaii have been the happiest in Mike's life thanks to his opportunity to work in the parish of St. Michael's, the diaconate program, and Habitat to Humanity. He loves living here and loves the communities he has connected with. His life has been deeply enriched by so many people.

    I found myself sleeping restlessly and getting up to pee more often than usual.  I assume that this is driven by fear.  Judy asked me what I would do if Mike did die.  I said, "Well, we would find out."  

    I believe today is our actual wedding anniversary. No, we don't celebrate it for several reasons.  We were in a committed relationship long before we were married.  I was the one who balked.  I had been taught that marriage can ruin a perfectly good relationship.  I wanted to avoid that. Then a friend of his first wife said to me, "Oh, for heaven's sake, Betty.  Get married for your mother's sake." So, I did, and I didn't live to regret it.  Although I figured out a way to trick my psyche so it wouldn't get messed up.  I told people I was married when I wasn't, so I wouldn't know when I did if I was or was not.  It must have worked.

    Besides a date for our commitment to each other and one for our actual wedding date, we have a second wedding, although we didn't need a marriage certificate for that one.  

The first wedding was a Quaker wedding which we had in Princeton.  This was before Mike or I converted.  The second actual wedding was a Catholic one.  So many dates and not one is celebrated.  I feel we celebrate our union every day. We both consider ourselves to be fortunate people.

    My biggest loss would be his affection.  Mike and I are both affectionate people. I can call out, "O.K.," and he's trained to drop everything and give me a nice long hug.  There a song out called, "Stitches." It goes, "without your kisses, I'll be needing stitches." Unfortunately, it keeps running through my mind.

    My back was giving me trouble. I think I injured it trying to move Mike's leg to make sure he got some joint movement. It has persisted but shifted around. I must be doing somewhat better because my groans are at a lower pitch, a more accurate measure of how much pain I'm in than my subjective estimation. I'm comfortable lying down; it's the getting up and down that's interesting.  Given I had to do a lot of going to the bathroom last night, I had a very interesting time of it.

    I'm wearing a back brace now that I bought at Long's, but that's a story in itself.  This is the second one I bought.  The first one was a medium.  That was too small.  Just hanging loosely, there were a good six inches between the two ends of the brace, and those ends were supposed to overlap.  I opened the package the first night Mike was in the ICU.  I couldn't get it on and felt I needed it. I had ICU attendants help me.  It took two to get it closed a little at the top end.  Forget the section closer to my hips.     Now, if I'm a large, heaven help half the folks living in Hawaii. We have Samoans living here. They're huge, even if they are not overweight. They're all built like refrigerators.

    When I called the hospital this morning, they told me he had survived, and he was even doing somewhat better.  They told me that everything was steady. I set aside funeral plans and rejoiced about his return to life.  These ups and downs are getting to me.  I didn't care for my adolescent intenseness; I don't particularly like this either.  But, it's becoming the new normal.

    John and Kathy Coughlin called and asked if I would like to go out to lunch with them to have a break.  Grabbed that.  Lovely Italian restaurant.  I think it's the one John takes Mike to when he's town.  Great food, great company.  They stopped off to visit Mike when we came back from lunch.

    Today was dialysis.  It was supposed to be yesterday, but his blood pressure was too low, and they canceled.  Lucky man, he's going to have dialysis two days in a row.  I even find dialysis exhausting. It's just another machine whirring away for me, but it feels like so much more.

    I went home around 6:30pm.  I was going to go to Costco to get gas and pick up something, but I was too exhausted.  I figured the way I was feeling, get to my final resting place for the night, and minimize the driving.

    I did something mindless:  I watched tv.  I was on some channel I'd never seen before.  I watched 101 Dalmatians, and then some ridiculous show matching children and their parents. It reminded me of a show featuring honeymooners. One partner was asked questions about the other.  When the other partners came back in the room, he/she had to guess what their partner had to say correctly.  If their answers matched, they won points. It was an early version of today's reality shows.  

    I had a very good night's sleep.  Before I left, one of the nurses said, "Don't come in so early." I took that to heart and spent some extra time in bed. I was worried that I hadn't yet reserved the room for an extra night.  I was going to need it because the ashram wasn't going to available on the 21st, only on the 22nd.  I managed to get it done in the morning without any problems. And went off to the hospital.

    The news was: they had cut one of his blood pressure meds because he was doing well on his own.  They had cut back the respiration support to encourage him to do more on his own. He wasn't running a fever, which suggested that he had no bacterial infection, but we will have to wait 2 more days for the culture to mature to find out precisely what is going on. It sounds like if bacteria weren't inserted when the tube was, there's a good chance he won't have a bacterial infection later on.  That would be fantastic. It's at the end of the day as I write this, and he hasn't had a fever yet, although he has thrown off one of his blankets. 

    He's been in and out of wakefulness/consciousness all day. When he's awake, he's often complaining of some pain. He's been hard to communicate with for quite a while. He's too exhausted to talk, or he's got a breathing mask over his mouth, or he's got a tube stuck down his throat. We're limited to head shakes.

    He was complaining of backaches a lot.  That would be understandable, lying in bed so long. I do some work on his feet, which I learned from a chiropractor.  I move them back and forth like windshield wipers, both feet moving back and forth together.  I might also flex and extend his feet at the ankles.  These motions seem to help his aching back.  

    Today he did something new.  He started banging on the guard rail of his bed when he needed something. He was complaining of a backache every few minutes.  I would do some work and then sit down, and he would start banging again after a few minutes.  I didn't know what to do to help him.  I tried to locate the precise pain thinking it might help me come to a better solution.  I started at the top of his chest, making several stops on the way down, asking him if his back pain was in that area.  He said no until I got to the very bottom.

    Ladies, if you think we would have problems in his position, I have news for you.  Lying endless on their backs creates problems for men, I couldn't have imagined on a bet.  Their boy parts have to hang in the standing position to get some rest.  Also, when lying on their backs, they descend into the valley between their legs.  This means constant pressure. It's not as bad as a swift kick, but it can be up there.   I told the nurse that if they can think of turning a long-term patient every two hours, can't they think of some way to provide similar relief to these very sensitive organs.  He nurse responded, "Well, everyone is different.  Some people aren't bothered." I said, "I would think everyone responds differently to lying in one position endlessly, too, but one and all are turned preventively."

    It's already Friday as I write this.  Too much going on.  As I remember the rest of the day, it was just more of the same.  Mike and I have developed a communication system.  He bangs his arm against the side rail of the bed. I rush to his side and start asking questions that can be answered with a yes or a no. "Are you hot?" Are you cold?" "Are you in pain?" Too hot or too cold is easy to deal with.  Hot, pull off the covers.  Cold, then go ask for some heated blankets placed as close to his skin as possible. If it's pain, then I have the challenge of locating the pain. "Is it in your back?  Is it in your penis? Those are the two main sites of pain for him. 

    I left around  6:30. I must have had something to eat somewhere but have no recall of that.

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.