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.

We're Meeting New People.....In the Hospital

So far we have met Shireen, Odessa and Katie.  Shireen is from Kenya, we met her in the emergency room, Odessa is not from Odessa and settled us into the room about 1 a.m., Katie is taking care of Marty in her room today.  We are lucky; these three nurses have been great.

Marty got sick last night, she did the body spasm thing and then, right after eating a marvelous dinner I had prepared, she threw up.  I don’t think it was a commentary on the pork tenderloin even though it was a bit dry.  It was, as proven by our ER visit, a systemic response to infection.

It was a surprise to all that we ended up in the ER that evening because we had just visited the good offices of Great and Wise to talk about a myriad of other niggling details.  Marty was sharp, clear, and responsive and at the doctor’s office.

After talking with Great and Wise I was flying solo in the late afternoon to give a couple of our ladies some much needed time away from us.  I kind of like being in the house alone with Marty, it gives us some time just to ourselves and keeps me really connected to all of the little idiosyncrasies of caring for Marty.  

I wish I could accurately describe Marty’s body’s actions when she does these spasm things.  It starts as a yawn and a stretch but is longer and more pronounced.  It is obviously different from a voluntary stretching of stiff muscles.  It almost always ends with a little moan from Marty and her upper torso contracting to the right.  

It’s all pretty subtle but when I see it I almost always start sweating from anxiety.  It’s actually a pretty amazing autonomic reaction on my part, Marty stretches uncontrollably, I sweat.

Dinner had been prepared but I knew, as subtle as it seemed, as much as I just wanted to blow it off and chalk it up to hyper vigilance we were going to make a trip to the ER, I started making plans.  Providence ER allows you to go on-line and set up an “appointment”.  What it really does is gives me some idea of how long we would wait to be seen.  I set up the appointment for 9 p.m.; the emergency room was clearly busy.

We ate supper and as I was cleaning the dishes, Marty still at the table started to heave a little, she was about to puke.  Now here is an amazing piece of rather gross information, I stood beside my bride as stuff came out her mouth, hands under her mouth catching the not digested food in a cloth all the while talking in a soothing voice, encouraging her not to hold back but let it go.  

This is completely contrary to my normal persona, in fact I’m feeling a little bit nauseated just writing about it, but for some mysterious reason that only loved ones and parents of puking little kids understand, how I felt about the vomiting process was not paramount in my mind. 

I immediately started planning a trip to the ER, not at 9 p.m. but right then.

As luck would have it the ER had received my request for an appointment and called and said I should bring Marty now.  I gathered the tools of our trade, the med list, the med history, the spare bag with hygiene essentials, my I pad and I pad charger.  With Marty loaded and locked in the van we got to the hospital about 6:50 and were in a room seeing a doctor and Shereen the Kenyan nurse by about 7:10, God bless Providence.

We made it up to a room on the third floor a little after midnight with the diagnosis of a mild pneumonia.  We met Odessa, the remarkably competent and caring floor nurse, she checked Marty out and in and I gave her my spiel and I left Marty in the competent hands of Odessa and her care giver La Shonda about 2 a.m...

We are still in the hospital hanging out watching Ellen and Jeopardy and CNN.  Marty has slept most of the day which is a good thing since she slept very little last night.  We have seen Great and Wise and will make some decisions about the length of stay after blood tests in the morning.

We don’t like being in the hospital, it really kind of bites.  All things considered we are here because we need to be and will do what we need to do to take our next step on our rather odd and winding journey.  

I never would have thought I could hold warm stomach fluids in my hand.  But it’s like a lot of things, you just do it without thinking because if you think about it too much it makes you kind of queasy.