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.

It's Back and I Still Don't Like It

It’s a palpable feeling.  A blast of anxiety causes your heart to speed up and your breathing become shallow and too fast.  You can almost feel the adrenaline surge through your body as all of your senses kick into hyper drive.  

Everyone, I mean everyone feels it at some point in their lives. I don’t like the way if feels, it’s an uncomfortable feeling but it’s an important part of our survival mechanism, it’s our bodies way of reacting to the powerful stimuli of the vagaries of life.

For me it’s a very keen, borderline obsessive alertness.  I liken it to a really good German Shorthair on point, everything rigid, all senses hyper aware.  Just like the dog my tail sticks straight up in the air (not a great look for a 63 year old man).  It’s like someone is squeezing the adrenalin out of where ever it comes from and it floods your body and boom, a magnified anxiety and sense of awareness has taken over your very soul.

Sometimes I forget how it feels.  I like that I forget.

As good as our lives have gone lately, as healthy (relatively speaking) as Marty has been it just takes a moment, an event, an instance and the flood of bad memories, the overwhelming anxiety comes back.

Marty threw up the other day and that’s what revived all of those feelings.  

We were eating a peaceful supper (okay, I’m from the country, I call it supper, you call it dinner) when she started doing that heaving thing we all do as a precursor to puking.  And then, of course came the real thing.  As bad as it sounds, at least if you are at the table you have a plate to collect the stuff coming up.

The only good thing about this event is there is no thinking, there is no muddling around thinking wondering what to do.  Marty pukes, we go to the ER, it’s just the way it is because when Marty does that thing there is something wrong that will not get better by ignoring it.  

This was about six p.m. (obviously….it’s supper time).  The ER was really crowded so we had to wait and wait and wait some more.  We finally got back to an ER room about 7:30.  I go into my spiel, trying to explain and convince everyone who comes in that we actually have done this before and we know Marty is sick, we know it’s not a 24 hour virus, it’s something else.  It helped that her blood pressure got too low and that always gets everyone’s attention.

Suffice it to say I pace a lot, I talk a lot, I explain a lot, I ask a lot of questions and I had to explain the real meaning of supper to a doctor and then we discovered Marty had pneumonia.  I was wrong because I would have sworn it was a UTI.  Oh well.

We got up to a room about midnight or so.  With the help of really great nurses and Nykkie, our care giver, we got Marty settled into a room at Providence 3 south.  It was a year, almost to the day, since we had been there last.

Our good doctor, Great and Wise, who normally checks us into the hospital and follows Marty’s care was out of commission due to his own illness.  It was bad timing for us, we really didn’t want to be sick when Great and Wise was broken. 

Since Marty’s strokes I have discovered the value and importance of continuity of care for someone with a chronic illness.  Having to explain our situation to new doctors, listening to them ask familiar questions, having new doctor’s orders issued that are really old orders we have done before, and repetitive tests done remind me of how important that continuity is.  Besides, we miss the comfort and confidence of his face.

We worked our way through the strange doctors; they are well meaning and highly skilled men and women.  Mostly it means we have to be more attentive and aggressive in our advocacy for Marty, and that’s fine, that’s why I make the big bucks.

We only stayed a couple of days and found our way home on a Saturday.  We washed the hospital funk off Marty’s body and out of her hair and were back in familiar confines with the pneumonia well in hand.  I know Marty always loves that first post hospital washing.

As a result of this little foray I am reminded of a couple of things:  there is a real adrenaline rush when Marty gets sick and I don’t like that feeling at all, we have been really lucky this year avoiding any real hospital kind of illnesses and we really value the skills and love of our own Great and Wise. 

And just as an aside, in spite of the recent downtime, I can still catch Marty’s vomit in a bucket and not puke myself.  I still got it baby.

Across the Hospital Hall, Literally Across the Hall

It was about 9:30 p.m., last night, Wednesday, we were in the van following Nykkie in her car.  Marty was behind me, her wheelchair locked and strapped down and she was trying to hold her orange puke bucket steady, I was trying not to drive too fast as I constantly checked her in my rear view mirror and offered encouraging platitudes as it was clear she felt really bad.

It’s a short drive from our house to Providence ER and quick thoughts ricocheted through my brain, “shit, not again”, “what a break that we weren’t at the lake 90 minutes away”, and always, always on this trip, “what if this is our last ride”.  That my friends is how you do morbid and banal at the same time.

We had just made this same trip, the result of the same unique to Marty symptoms a couple of weeks ago.  Was it another respiratory infection, a UTI this time, or pneumonia again?  It makes you tired running all of these thoughts through your head as you make the simple seven minute drive, man the brain moves fast.

I pulled into the ER bay, put the van in park and in our practiced and well coordinated fashion Nykkie helped me get Marty out and then took over the van.   I took over Marty and with our drug information, medical history, I Pad, phone and orange puke bucket, we rolled into the ER.

The next words, the words to get you into triage fast are a big deal.  I spit them out, infection, septic, hypotensive, stroke, vomiting.  Marty helped by dry heaving over the bowl I cradled under her chin as I held the paper work.  We hit triage in about 15 minutes and were in a room with a doctor in another 5 minutes, it helps when Marty cooperates with really low oxygen and blood pressure numbers.

Nykkie and I expertly moved Marty to the gurney and sweat started pouring from my forehead and ran down the back of my neck and down my back, a sure sign of my red lined anxiety.  This was not a new situation, in fact we have been in this very room before but I have to say, this had come on so fast and Marty was so sick I was walking on that fine line between panic and controlled anxiety.

She got immediate attention and over a multi-hour period of time blood was taken, urine was taken, an IV was started and my “why we are here” story was given multiple times.  I don’t mind repeating myself because talking helps me with control and any time you walk in the hospital you cede control, I don’t do control ceding well.

A case in point, Marty was soon on the receiving end of a nasal gastric tube, a tube that sounds bad, looks bad and is bad.  The tube runs through your nose into your stomach, it literally sucks, sucks to have it put in and it sucks really nasty looking stuff from the stomach.  

We had never experienced this and I really doubted the efficacy of the whole thing but the ER doc was pretty convinced, based on an X-Ray and exam that Marty had a GI impaction.  I sat there trying to figure out, do I allow this, do I stop it and say no, we don’t need to do this. 

I gave her history, I gave dates, it didn’t change the experts concerns, it’s hard to argue with experts.  I sat there and felt guilty about allowing the whole thing but afraid to stop the rolling ball for fear this educated man was more right than I was.  They did the work, they did the CAT scan, there was no obstruction, and there was no need for emergency surgery.  All of that was good news but I kept thinking, I should have objected, but the reassurance of knowing her gut was good was good.

The end result of the tale, after spending the whole night in the ER, is probable pneumonia, possible sepsis and time in the hospital.  We are back on 3^rd floor south across the hall from where we were two weeks ago, those good folks know us.  

I don’t think we will be here long but the comfort of skilled nurses, good drugs and fluids trumps my rather obsessive need to control all aspects of Marty’s care, besides I’m a pretty charming fellow and more often than not can cajole these health care professionals  to do some things my way.

I hate being here, I hate it mostly for Marty, but for sure I hate it for me. 

Truth and I know this…..it’s a necessary part of our journey and frankly I’m really just along for the ride, regardless of what I think.

A Failure to Act

I have many fears, many sources of anxiety.  One of my biggest is not will I miss something; it is I will blow something off that’s important.  I don’t worry about missing clues, I worry about ignoring them.

When Marty and I started we settled into rather comfortable roles.  She tended to over inflate, I tended to under inflate, she would maximize the good and the bad, I was the yang, I tended to minimize the bad and the good.  There was certain symmetry of our opposites, but there was also tender for the angry fires of a budding relationship.

Too often Marty thought I was minimizing how she felt or what she worried over, she was right, I probably was.  But, the opposite was also true, too often she made the most out of what seemed inconsequential, I suspect to get me to pay attention to the issue.   Does that sound familiar to any married couples out there?

Things change, Marty’s strokes and the associated illness that come as a part of that have pushed me to abandon my minimalist approach to, well everything except cooking.  I have had to abandon the rather childish view of, “well, it will be okay.” I can no longer blow stuff off assuming it will just be okay, I can’t just ignore the small stuff because in our life the small stuff rapidly turns to big stuff. been several weeks 

We had been on a good healthy streak since Marty’s last hospitalization in February.  We had gone several weeks sans antibiotics and generally Marty felt okay.  She was eating well, sleeping well and engaging appropriately.

Then suddenly there was Sunday.  Sunday started good.  Marty woke, ate breakfast, got up, ate lunch and we settled into our Sunday afternoon routine sitting in the living room doing exercises.  Then, she did the weird body spasm contracting thing she does when she’s sick, just once.

I sat there and watched her waiting for it to happen again, nothing, we sat there.  I thought maybe it was nothing, maybe I just didn’t see it right, maybe it’s a fluke, maybe I could try really hard and rationalize my concerns away and fall back to the familiar, the comfortable blow it off mode.

Her body did it again a few minutes later, nothing big, subtle movements but enough for me to go on-line and register for a trip to the Providence Emergency Room.

I give kudos to Prove ER and their InQuicker process as we sailed through triage and were in an exam room within about 30 minutes of our arrival.  Marty’s vitals were good, she wasn’t in any distress, she didn’t hurt and she didn’t have a fever but I knew,  because of the funny body spasm thing,  she had an infection, or that was my assumption based on my doctorate of Marty.

Maybe it’s the earnest way I tell her story, maybe they just hear weird stuff all of the time but the nurse and the doctor listened to my tale intently and started doing all of the requisite tests.  Sure enough Marty had a pretty bad infection, origin unknown.  

They checked the obvious, the urine, the chest, the abdomen and everything was normal save the white count which they dealt with by using a big time antibiotic with instructions to see Great and Wise the following day.

I called his office Monday morning and walked in unannounced with Marty and a sample of her snot about 1 p.m. that afternoon.  She got another antibiotic shot a prescription for more and we went home.

Marty is feeling fine today, we are at the lake and the cause of the infection was in the snot.  The drugs she is taking will kill the bacteria and all is right with our world today, we passed another test.

My fear, my big fear is my natural inclination to ignore the bad will someday keep me from acting.  My fear is that I will see something and ignore it long enough for little to become big.  My fear is that my newly discovered hyper vigilance will become exhausted to the point I will one day ignore the evidence and opt for “things will be just fine”, when everyone knows things won’t be just fine.

You see, we have learned a lot over the last years about Marty and the ramifications of her disease.  Certainly we have not learned everything and we will continue to meet new things, but we do know a lot about Marty and what her sick signs are.  

My fear is not that I will not miss something out of ignorance or because I’m not paying attention.  My fear, as always will be that I will ignore what I know.