Sunday, May 19, 2019

A Promise Kept



We got home from the last hospitalization on Wednesday, April 17th.  I was kind of amazed we were home at all, much less this quickly after such a horrendous respiratory event, but there we were, home sweet home.

We had appointments lined up the following week with Great and Wise and a little further into the month we were going to see the lung doctor and then the cardiologist.  In all the respiratory melee we had discovered Marty had an aortic stenosis, and to point out how acute the respiratory issue was, this wasn’t even on the first page of concerns. 


When we got home it was clear Marty was very weak and suffering from the trauma her body had inflicted upon her.  

I was wired head to toe, and I was waiting for the next shoe to drop, I was scared.  All that happy talk months before about living in the moment and not planning a funeral every time Marty coughed had gone up in smoke.  I was back in a grievously familiar feeling where I could feel my heart beating in my temples 24 hours a day.

Keep in mind we have good help.  We can do almost the same things to care for Marty they do in the hospital and more than they would do in sub-acute care. But, when you are in the hospital you don’t have to figure it out yourself, there are really skilled people there to help.  At home, I’m it, I’m the skilled person who must make decisions and that is a terrific burden when you are deeply in the love with the person you are watching.

Marty was weak, tired and couldn’t really help when we moved her from bed to chair and back again, she couldn’t support herself at all.  Wednesday she got two baths to wash off the hospital funk, Thursday she slept and I paced and fretted about her sleeping, Friday she seemed better and we sat outside talking for a while, Saturday was the same, doing okay, not great, but strong enough to go outside.  Sunday she was really tired and stayed in bed all day, it was a sign.

Monday, not long after the home health nurse came and checked her out Marty started acting sick again.  She does this body thing,  her body contracts to the left, this nebulous thing I have to tell the ER docs about, and they look at me and think I’m one of those hyper vigilant nuts who overreacts all the time (I am that exactly).  

Marty cooperated and ran a fever, in the nurses eyes, in my eyes she was legit sick again, she was legit sick again probably with upper respiratory crud.  We were back.

They moved her to ICU again out of an abundance of caution, bounce back patients scare the docs a lot, it makes them look bad.  I was good with ICU, the nurses there are great, and someone is watching all the time.

The next day Marty’s white count (a sign of infection) was down, not normal but down, and we moved to a regular room, 329.  I figured we were there for a few days and home again by the end of the week.

I kept coming up to the hospital earlier every morning to catch the rotating docs looking after Marty.  It’s a game, a losing game, to figure out when they would be there.  About Thursday the docs started talking about going home in a day or two, that kept getting pushed back with new x-rays, a new diagnosis of thrush and anemia, and finally a rash we think was a result of the meds for the thrush.   We were stuck in a medical loop and Marty looked and felt a little like Job, waiting for the next thing God would throw her way.

We rolled along until early Friday morning, May 3rd, the morning she was scheduled to get a PEG tube in her stomach to avoid swallowing and aspiration issues.  That morning, early, all of the sudden, she got sicker, she threw up and started again with the same respiratory distress we had seen earlier.  In case you haven’t seen it, don’t, real respiratory distress, people trying to breath and get enough oxygen is simply awful to watch and clearly very frightening to the person trying to get air.

By Friday afternoon things had settled a bit but we were all still on high alert. Matt and Erin had come down to be with Marty and stand with me.  I sat with Marty, holding her hand, listened and watched as the kids talked to her and showed her videos of their kids.  Marty watched, paid attention, knew who was in the room but was clearly weak and the docs were not wanting her to eat or drink for fear of further aspiration.

I watched her seem to sink further into the bed.  You see people laying on a bed, sort of on top of the mattress, resting.  Marty was a part of the bed, enveloped in the mattress unable to really pull herself up.

Matt spent the night with Marty Friday into Saturday, and she had another respiratory crisis about 4 a.m.  With help from a respiratory tech the crisis was averted again.  Saturday was a hard day waiting for doctors wondering where all of this was going.

Sunday morning brought the same early morning respiratory crises.  She simply did not have the strength to clear the secretions and use her lungs enough to be comfortable and meet the minimum oxygen needs of a body.  That afternoon the respiratory guru of Waco came in, looked, listened and stood there quietly.

I asked Dr. Ritchey what was next, what was the next thing we needed to try and do.  He looked at me, looked at Matt and said very simply and kindly, “I don’t think she is going to get better.”
I looked at him and said, “I broke my word to her once, I won’t do it again, we can’t intubate.”  

He said it made sense to bring in hospice.  They were there that evening with me, Marty, Matt and Erin.  It was really the first and last time Marty seemed to pay attention.

Monday morning it seemed as if we wouldn’t get to hospice, that Marty wouldn’t make it to that transition point.  The good Dr. Ritchey gave one last order, for morphine, before the hospice doc took over Marty’s care.

As the nurse was about to administer the morphine I asked her to wait for just a second while I whispered to Marty one last time, “I love you, you have been a hero and you go whenever you are ready, we will be with you always.”  

The nurse, a wonderful example of care and compassion, gave Marty the morphine and she relaxed a   It was clear our journey was going to end soon.
little for the first time in 48 hours.

It is incredibly hard to make the shift from fighting beside your wife for every extra minute of existence.  For 14 years Marty and I had been in pitched battle with frailty, infection, disease and death.  We had been together in multiple hospitals with multiple doctors doing multiple procedures to give us one more day, one more week, one more year.  I, with my children, had now made the decision to quit the fight and let her broken body run its course.

It felt like a monumental defeat, it felt like giving up on a life’s work, it felt like I was letting her down and quitting on her.  I know none of that is true, but it’s true that’s how it feels.

Marty spent Monday holding hands with me, Matt, Erin, LaShonda, Sue and other friends.  Old and current preachers came by to whisper in her ear and touch her hand.  There were tears and some laughter as people came and paid respects to this rather amazing woman and her family.  
 
I thought she would make it to Tuesday when my parents were going to come down and see her one last time.  Her heart and lungs stopped at the same time, 6:50 a.m. on Tuesday, May 7, 2019 at Providence Hospital.  Nykkie, her long-time caregiver and sister wife held her as she breathed her last, once again she was never alone.

When I spoke my last words to Marty before the morphine, she knew what was coming and somehow, I think she knew it was time for her to leave.  I think the part of her that made her uniquely human, uniquely Marty, that soul, that electrical aura, left Sunday morning.  I think she was out of that broken body and watched as her friends and family came, cried and laughed and prayed for her.  I think we were all simply letting the earthly body run its course, and it did.

Marty and I talked of death a lot.  It happens when you have come close so many times.  I used to tell her she was my forever obligation because I had saved her life on three or four occasions by calling the right people.  She accepted that.

She once told me when I asked her if she was afraid of dying that sure she was but that really death of just another way of being.  

I believe her.




No comments: