A Promise Kept

We got home from the last hospitalization on Wednesday, April 17^th.  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 3^rd, 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.

A Broken Promise

That great philosopher and sage Mike Tyson said it best, “Everyone has a plan until you hit them in the face.”  How astute and perfectly said.

We got hit in the face.  I thought I was prepared, I thought I had a plan, I thought I knew how to handle it.  I let my own theories delude me.

On April 7th, a Sunday, Marty and I were headed to Dallas to see Hamilton at the Dallas Summer Musicals.  In the end, we didn’t see Hamilton and I broke a promise to my bride.

Right before we were going to get in the van Marty started really struggling to breathe, she was working hard to get enough oxygen and you could see she was losing the fight.  We blew off Hamilton and wore our theater duds to the hospital.

There was no doubt we needed to be seen now, when the triage nurse saw us, we were taken immediately to an ER room with a bevy of nurses taking vitals and hooking Marty up to monitors.  She was not getting enough oxygen, she was breathing heavily with her chest and abdomen and falling behind and the thing I hate the most, she was afraid.  She didn’t say it, she couldn’t really talk, but I could see it, she was scared…..she wasn’t the only one.

They tried several different things to help her breathing but she simply was not getting enough oxygen and was working her entire body to the extreme to get air, and she was still slowly suffocating.  I sat beside her gurney as they tried different machines and masks and I held her hand as she struggled.  Erica, caregiver deluxe, stood at her head, holding her head whispering prayers in her ear.  It was brutal, her trying to get oxygen was almost violent.

I contacted the kids, I honestly don’t remember if it was text or a call, but I think they read through the lines and immediately understood that this was different, this was, in a word that doesn’t do it justice, bad.  Matt got in his car and headed south to Waco.

After testing, poking and prodding, doctoring, nursing and breathing treatments seemed to fail to stop what was clearly a critical issue they moved us up to ICU.  We hadn’t been in the ICU in 14 years.

We got up to the Intensive Care Unit and found ourselves among some of the best health care providers in Waco.  Dr. Rod Ritchey, a small man with glasses and an astounding shock of grey hair to match his beard took over Marty’s care.  We couldn’t have been in better hands.   I was shocked, not shocked, when he asked me how we felt about intubation, he said simply, we are headed there, think about it.

Marty and I have had the talk, the one all of you need to have with your loved ones, the one where you talk theoretical bullshit about death and dying and how you want to go out and what you want those who love you to do if you are in a swirling drain.  I knew what Marty wanted.  But this was real, this was not theory, this was cold, clear reality.

I had promised Marty not to resuscitate, I had promised her that I would find the courage to say let her go if and when we faced that issue.  I promised Marty I would not have her intubated again, I had said those words to her, she had confirmed to me, that was her wish, that was what she wanted.

Those conversations played over and over in my head as I watched her, with a huge BiPap machine pushing air into her lungs, struggle to stay connected to the world.  I watched this almost violent drama played out, I held her hand as she squeezed my hand so tight the blood cut off to my fingers, I listened as she struggled to breath.  It broke my heart, if felt like the end of our journey.

Dr. Ritchey came back to me an hour later, looked me in the eyes and quietly said, “We need to make a decision, she can’t do this much longer.”  

I looked at Marty, my bride of 42 years, the woman who was my complete responsibility, the woman who had complete faith in me to do the right thing and I saw how afraid she was, how hard she was fighting and I thought about the promises I wanted honor, I thought about all of the times I had pretended I would have the courage to fulfill that promise.  

I couldn’t do it; this was too hard.  I told him to go ahead and intubate and put her on the life sustaining ventilator.

They asked me to step out and I walked down to the ICU waiting room and thought about the people we knew who would want to know what was going on, I thought about how afraid Marty must have been, I thought about how I was breaking my word to her, I almost got up and ran into the room to say stop, she doesn’t want this.

I didn’t, I accepted that tonight, I wasn’t going to keep a very basic promise to my wife.

That was Sunday night.  Wednesday they began to wean her off the vent, Thursday we were in a regular room, the next Wednesday we went home.

At least for a while.

Ecstasy & Agony

When Matt, our oldest, was born, Marty sent out birth announcements with a little sketch of a baby and the words, “Every child comes with the message that God is not yet discourage of man.” A quote from a dude named Rabindranath Tagore, a Bengali artist.

I love this.

Well, it happened again, God gave the world another message, in fact God gave us a couple of messages. Our daughter Erin brought life, to not one, but two new baby girls.  They came roaring into the world January 10 at roughly 6:30p.m. 

It was, is, way cool.

I’m pretty sure Layla Bird is the oldest by about two minutes and then came Liza Lou.  They are healthy, hungry and home and despite the ensuing childhood illnesses befalling all those around them, they are eating, pooping, sleeping and growing, in short being infants.

The names, the middle names, are family names from my mother’s side.  My Mom is a Bettye Lou and her sister was Ebba Bird.  I really like the names, they go well with Lily Jewell and Lucy Jean.  They are Texas through and through and if they hang with me enough, they will talk like they are from west Texas, really, it’s quiet charming.

I was there on their birthday as a matter of serendipity.  We were at the lake and I had just texted Erin to say I was on my way to deliver some baby tools on loan from friends in Houston when she said it was good I was coming because she was on her way to labor and delivery.  Delivery occurred about 6 hours after my arrival.

I took Marty up to meet Layla and Liza the next day and she squirreled up enough courage to hold Liza.  Marty is always afraid she is not safe holding babies.  Not true mon Cheri, you are why these babies will always be safe, you showed us the way.

 

New children, new grandchildren are the perfect Ecstasy.

On Monday following that ecstasy Marty got sick, thus a little bit of agony.  We were at the lake when Marty clearly started spiraling down the “I’m gonna get sick” drain.  When she puked we knew it was time so we loaded ourselves and the dog in our vehicles and hot footed over to Providence in Waco.

This is one of those moments I had dreaded for a long time.  Marty getting sick that far away from our home hospital and having to make the decision to drive the hour and half to Waco or detour to Corsicana or Fairfield, both an hour closer.  I made the decision to get to Waco and so we rode, Marty tucked into the passenger seat of our van with her puke bucket and Nykkie, caregiver extraordinaire and the dog following in the truck.

As an aside and as a public service announcement, if you are planning an illness, wait for a few weeks because the hospitals are just nuts right now with flu and upper respiratory illnesses and there is coughing and hacking all over the waiting room, and that was just me and Marty.

It took about 3 hours for Marty to graduate from the lobby to an ER room.  Providence folks were smart though and had already drawn blood and done a chest x-ray so by the time we got back to the back we, they knew Marty was sick with and elevated white count (infection) and some cloudy areas on her chest x-ray.  We got to her room up stairs about 8 p.m., the first time we have been in the hospital since September of 2017. 

That’s awful for normal people, pretty good for those of us lined up in the health care aberration line.

 

That was a Monday, on Friday we made our way home.  Once home Marty got the obligatory shower and hair wash to rid herself of the hospital funk.  She was still a bit congested but free of any possibility of infection so home felt like, well home.

We spent the weekend doing regular stuff and on Tuesday following I drove to Dallas to see the new additions.  I had to see the two new messages from God, the two wonderful notions that God loves and shows us love and commands love.  I needed to see the antithesis of the week in the hospital, know that in spite of it all, it spite of the agony of brokenness, in spite of the anxiety of illness, in spite of the pain of watching illness, real ecstasy exists, real miracles occur.

PS….We went back to hospital two weeks later.