Friday, February 8, 2019

            Just spoke to two doctors this morning, the hospitalist and the surgeon who is in charge of his pancreatitis:

Good news: He has no infection.  He reports no pain in his abdomen.

Neutral news:  He has more fluid in his abdomen.  They believe this is because he is getting more fluid intravenously, and the dialysis isn’t pulling it all out.

Bad news: Dr. Izawa, the surgeon, speculates that he has lost at least ¾ of his pancreas. The living tissue takes the dye; the dead tissue shows up as black. He also thinks that he will require up to five (5) surgeries to get rid of all the dead tissue that has to be cleaned out.  While he reports no more pain in his abdomen, the back pain he has been complaining about may be a result of the inflammation.

            They may, at some point, choose to drain the excess liquid.  This carries some risk as any penetration of the abdominal wall must.  The hospitalist said they would wait until the sack surrounding the pancreas thickens enough, so when they drain the fluid, it doesn’t leak into the rest of the abdominal area.  It is probably connective tissue which surrounds the pancreas.  Each organ, and each part of each organ, is enclosed in a separate sack.

            His blood sugar was 127 this morning.  High.  He got another insulin shot.

            The doctor says he anticipates that he will be in the hospital for several months.

             I left early today, 2:30 instead of 5:30. I was exhausted.  It was a bad night with ups and downs during the day. Last night, I stayed till 7:30. He was getting dialysis.  Boy, he hates the process. He hates it when he’s healthy; it’s worse now.  They usually change his position in bed every two hours.  While he is receiving dialysis, he has to remain in the same position for four straight hours.  His back was killing him.  We found that if I manipulated, not massaged, his feet, it relieved the back pain.  His muscles are so tight, it’s hard to either flex or extend his ankle very far.  This is not a result of his current illness.  It’s a result of a poor stretching routine.  Hopefully, he will be more open to the suggestions Yvette, and I have to offer him on how to deal with his body during his recovery at home.  When I do make a suggestion, he tries it and reports, “Now, this feels comfortable.” Not.  Well, what does he expect?   You do something different from what you’ve done for the last 70 years, it’s not going to feel comfortable. How else are you going to make changes if all you ever want to do is what is already familiar?

            By this time, I got to bed it was 10 pm, and I hadn’t had a nap earlier.  I’m in a routine now where I come home, collapse and wake up three or four hours later, have some dinner and then go back to bed for the rest of the night. Last night, even without the nap and being exhausted, I had trouble falling asleep.  I had learned that the hospital is fully booked with flu patients. They’ll be hanging them from the rafters pretty soon.  I thought, If Mike gets the flu on top of this, it’s all over.  I  thought how careless I have been touching him without cleaning my hands first every time and kissing him.  I felt some congestion and feared I had already contaminated him if I had the flu. I found myself fighting sleep to ward off the flu.  That’s what Mike’s been doing.  Fighting off sleep to make himself get better.  I realized that fighting off sleep when anticipating a life-threatening danger is normal. It must be the default setting of our brains.  We can’t do much about an internal threat, but we can protect ourselves from an external one.  Our brains must be set to the external threat.  It only registers threat and doesn’t differentiate between internal and external.

            Besides those terrifying thoughts that sent me back into grief mode, an exhausting state of mind, someone was running the clothes dryer right next to my room late into the night.  It wasn’t just the noise; it was the smell. The machine gave off the faint smell of something burning.  I tried to go to sleep while I planned my escape from a burning building. All told, it made for less than a good night’s sleep.

            I woke up early. I decided to check out the Ashram on my way there.  It is just a bit off the main highway on my way to the hospital.  It is absolutely gorgeous.  It is everything the place I am staying in is not.  It is lovingly and meticulously maintained.  Everywhere my eye falls, there is another charming detail.  I went into their dining area, where I found some members.  These indeed are the Hare Krishna guys, but they’re mature people who have chosen this life path. They run this BnB to sustain their property.  It is not a way to lure people into their cult. Every religion is called a cult until it becomes established.

            I have a BnB reservation from the 10ththrough the 16th, and directly through him from the 23rdto the end of March.  The guy who runs the BnB program didn’t have a room for me between the 16thand the 23rd.  I was making plans to look for another accommodation.  He said he could give me a room without a private bathroom.  “It’s Shakti’s room.  She will be away.” I told him I would go out and buy a robe and take it. I have reservations now from February 10ththrough the end of March in Waikiki.  Not only that, this reservation includes three meals a day and a community of caring people.  How’s this for luck.  I told the guy running it that I might like to do some work around the place once Mike was more on his feet just to do something productive that wasn’t Mike related. He warned me not to make such an offer.

            The only problem with this arrangement is I kind of like what I’m doing now.  I nap till 7 or 8, get up, have some dinner, and then write and finally go back to bed for the rest of the night.  Another routine disrupted.  Make a routine; break a routine. Oh, for the monotonous life.

            As I turned to leave the Ashram this morning, I missed a step.  It was one of those glorious opportunities to break an ankle in six places. Nothing.  Thank you, Bikram and Melt.

            Then I headed to the hospital.  I arrived around my usual time.  Mike was pretty much the same.  He can converse now, although it is still sometimes hard to understand him. ‘As far as I’m concerned, he always swallowed is words and was somewhat hard to understand. But this is worse. For some reason, his face is less animated. When he smiles, his lips don’t turn up, but I can see the smile or laughter in his eyes.  He hasn’t lost his sense of humor.

            Dave Kane was there when I arrived.  What a breath of fresh air.  He has so much laughter in him.  He was good for both of us. 

            Someone, I can’t remember who told me that the CT scan showed an increase of fluid in Mike’s stomach.  I immediately interpreted that to mean that infection had set in, a disastrous turn of events. He also had had a fever of 100.3.  I walked out of the room and tried to calm myself.  I was already grieving from last night.  An infection of any sort would mean a serious turn of events.

            When I finally did speak to the hospitalist, he said, “Oh, no.  There’s no infection.  There’s increased fluid buildup because they are giving him more and because his kidneys aren’t functioning, the fluid builds up.  No worries. “ Ah. Up down, and the down up. He also told me that hospitals don’t consider someone to have a temperature until it is above 100.4.  I heard 104 degrees.  I thought, really? That sounds pretty serious to me. It took a minute until I understood him to say 100.4 and not 104.

            I spent a fair amount of time this morning working on extending my Turo car reservation.  Thanks to Judy Glickstein for recommending Turo, and my step-son, Damon, for finding a Prius.  This is what I drive at home.  I could probably handle anything now, but at the beginning, the smaller the change from what I was familiar with, the better.  Damon managed to car reservations, and Shivani, my niece, dealt with the Airbnb reservations. I might have wound up on a park bench if it hadn’t been for those two.  I was on overload, incapable of making any real decisions, no less dealing with the technology needed to make these reservations. To boot, Shivani left on Sunday morning early, making sure she saw me to my accommodations and spent the night before she left.  I cannot begin to tell you how deeply grateful I am for the care these kids gave me.

            When I tried to extend my Turo Prius reservation, it rejected my card.  So, I called this morning.  Unfortunately, the young lady support person had two problems: she spoke with a considerable accent, and she didn’t know beans about her job.  She kept telling me to look for an icon in the upper right-hand corner.  She insisted it was there.  Eventually, I was almost screaming, “There is NOTHING in the upper right-hand corner.” I was sitting at some tables that are set up at the edge of the driveway to the hospital.  We all share tables with strangers.  Some poor unsuspecting Kaiser employee was sitting next to me. I stuck the phone in his face and asked, “Do you see anything in the upper right-hand corner.”  He agreed there was nothing there. “See, I said.”

            I finally started doing what any nine-year-old would do, I started pressing anything and everything I could see on the phone. Finally found what she was looking for.  It was in the lower right-hand corner.  I had to give them a different credit card number. The whole operation must have taken half an hour.  It added to my considerable frustration for the day. 

            Mike often complains he has to pee. This is because of pressure on his bladder from the fluid buildup in his abdomen and because there is some chemical mix in there that also aggravates the bladder.  He was complaining about it today.  But today, he said it hurts and pointed to his groin. I asked if his penis hurt or his scrotum.  He said it was his scrotum.  He said it was full of pee, and they had to drain it.  Time for a review of basic anatomy.  I got the nurse and told her the problem.  He is suffering from ‘diaper’ rash.  I find myself often suffering likewise.  At this age, our skin breaks down so much faster.

            The nurse took care of the problem.  She applied some salve and added some additional cover to that area.  That’s why I’m sitting there for as long as I do.  I don’t seem to make much difference for his actual health.  There are many situations where a loved one has saved a patient’s very life by taking action contradictory to doctor’s orders.  But I do seem to be able to add to his comfort and basic well-being.

            This reminds me.  I spoke to his kidney doctor to give him what-for for the advice he had given the nurse at the dialysis center the night of Mike’s attack.

    I had driven Mike to the dialysis center for his regular Thursday appointment at 5 pm.  Around 7:30 pm, I got a call telling me that he had thrown up. They had to stop the dialysis. I was to come to pick him up and bring a clean pair of pants.

    When I got there, the nurse said Mike had eaten a high protein chocolate chip cookie, which made him sick.  He was in the bathroom.  I went in to check on him. I had never smelled anything like it. I couldn’t stay in the room.     I know, in retrospect, I was smelling his destroyed pancreas being discharged from his body.  If that nurse had gone into the bathroom and smelled what I did, he would have known immediately it was a serious situation.

    I came out and told the nurse that something was terribly wrong and to call an ambulance.  Rather than do that, he called Mike’s kidney doctor on Oahu.  The nurse said the doctor said it sounded like a GI infection, and to just take him home, he would be fine.

    I insisted he had to go to the emergency room.  The nurse shrugged and told me to do whatever I wanted, but it wasn’t necessary.  The dialysis center was halfway between home and the hospital. I drove Mike right to the emergency room. Thank God I did. 

    I don’t know if taking him there prolonged his life by five weeks, but I do know that the ER doctor quickly figured out what was going on and knocked him out, so he didn’t have to suffer.  As we left for the airport, the ER doctor put his hand on my shoulder and said, “I’m sorry.”  I just brushed that away.  What was he talking about?  It was just an attack of pancreatitis. 

      When I challenged the doctor, he said he told the nurse it was probably is GI virus, but if there was any question to send him to the emergency room. If I had thought about it for a minute, I would have realized that he would never have given a definitive diagnosis over the phone without even speaking to the patient. However, the nurse did not communicate that full message. This nurse is one of the nicest guys. It clearly wasn’t from lack of care that he told me just to go home, he would be fine. He was concerned about how much the ambulance would cost. For those who have read what I think might be my earlier description of this situation, I drove Mike to the emergency room immediately.   I called the dialysis facility the next day to suggest that they get some clear policy in place, so it doesn’t have to be the call of the nurse on duty, I believe she heard a veiled threat of a lawsuit.   What does she know!  I don’t make veiled anything. What you see and what you hear is what you get.

            I left the hospital early today, hoping that everything would be okay.  His situation is so miserable. Here is an active, basically healthy man confined to a bed, unable to get any food or water into his mouth for two straight weeks so far and looking at least another week before he does, and many, many more weeks before he can think of getting out of the hospital.  He is doing a remarkable job coping with it.  I am usually proud of him.  I think he is an absolutely amazing man.  I couldn’t’ be luckier.  I tell him I love him every day.  I’ve made it clear to him, I need only three things from him: he can’t sit on the pity pot as his mother did, he can’t take out his frustrations on me and verbally abuse me, and he has to continue to allow me to love him to bits and pieces.  I realize I have a fourth to add on: he has to continue to find me funny.  Sometimes when I do silly things in his presence, I can see the laughter in his eyes. Yes, when you visit, make him laugh. Tell him jokes. Tell him funny stories.  Tell him what you’ve been doing.  Tell him what you’ve been thinking.  He needs the stimulation.  This isn’t a wake - yet.

            Before I left, he started complaining about stomach pains. This is alarming.  I quickly got the nurse. I learned it had been18 hours since he had his last jigger of Tylenol intravenously. Wow! Pretty good.  I made sure he had it before I left, and I reminded him to open his mouth when he was in pain. He has a sitter in the room who can get the nurse anytime.

            After I got home around 3:30, I called to see how he was and to assure him I had made it home safely.  The sitter answered.  She told me he had sweat badly.  I asked in alarm for his temperature.  She told me thirty something.   I almost screamed, “TELL ME IN ENGLISH!’ I managed to get out in a reasonably calm voice, ” Tell me in Fahrenheit.” 97.5.  Huh!  Why would he be sweating like that? She just told me they changed his bottom sheet.

            When I woke up from my nap at 8 pm., I called again. Fortunately, the nurse was in the room. I learned that he was sweating because of what was under him.  He is lying on an inflatable rubber mat, which they use to facilitate turning him. The mat doesn’t breathe, causing him to sweat.  The nurse said they solved the problem by putting on extra sheets between the mat and his body.

            My friend Judy told me that she lay on an inflatable mat like that when she was in the hospital, and they used it to make sure she was moved around a bit periodically. I thought, why can’t they use it when he’s on dialysis for four hours straight. Tomorrow is a dialysis day. I want to make sure I’m there to ask the dialysis nurse to use the mat.

            It means a lot to me to write these entries.  For now, it is like releasing all that information and accompanying tension. It means a lot to me to know that there are people out there who are reading it.  It freaks me out a little when I talk to someone, and they refer to something I’ve written, but it also feels really good. Thank you to all of you who find these Blog entries are and accompanying me on this journey.   I hear from some that you don’t email because you don’t want to bother me. Please, I would love to hear from you. Your own happenings, suggestions, or questions or responses to what I have written.  If you have a question, I’ll answer it in the Blog rather than individually. I think they’d have to cart me off to a looney bin if I had to answer everyone questions individually and repeat these stories e- n-d - l-e - s-s - l-y .  OMG!