Tuesday, March 22, 2016

The 2nd One Part V -- Pate Rehab

I'm finishing the story of how we got here....a little at a time.  I'm not sure why it's so hard to write this,  but writing about the actual events is really, really hard.....I remember it clearly, I have notes, but it's hard.  At the end of this post I have inserted the previous parts of our journey if you want the long read.  As always, thanks for reading and I appreciate the feedback.

In March of 2006 we found ourselves on the way to a comprehensive rehab facility in Dallas.  Pate Rehab came highly recommended and I wanted to go there because in addition to the normal therapies they also worked on cognitive therapy.  Pate specialized in traumatic brain injury and we clearly were dealing with a traumatic brain injury.

They came and picked Marty up in a mini-van early one afternoon and I followed them in my car to Dallas to check her in to their program.  Marty had not been out of bed more than a couple of hours at a time in three months and I worried about her being able to physically stand up to the day.  But then, I worried about damn near everything.

We got to Dallas, went through the check-in process and they moved us to an apartment about 30 minutes from the rehab facility.  By the time we got there is was early evening and Marty was really tired and so was I, it had been a very long, trying, tiring day.

Marty was in a three bedroom apartment with two other recovering stroke patients, Max and Earl.  Max was much younger, in a wheel chair but very talkative.  Earl was about Marty’s age, also in a wheel chair and had an incredibly sweet, kind temperament.  They were Pate veterans at this point and knew the routine.

I had managed to talk my way into staying with Marty at sleeping in the room with her.  It was apparently unusual to allow this but it was the only way, the only way I could see us doing this.  It was my opinion that Marty needed her family to protect her.  To Pate’s credit they made an exception and gave me a key to the apartment so I could be there with Marty when she was there and just hang there during the day while Marty and her crew were at rehab.

The apartment was staffed by a Certified Nursing Assistant to tend to the patients needs, dole out meds and prepare meals.  To a person they were all sweet, competent ladies who frankly were a little overmatched by Marty’s needs.  I helped where they would allow but they simply were not accustomed to dealing with a patient like Marty and her medical and dietary needs.

We made it through the first evening and night with me working to make sure all of the correct medicines were transferred to Marty in Dallas, no easy feat.  I helped bathe Marty the first night because bathing Marty, at the time, was a two person job.

I can only imagine how Marty must have felt about the whole thing.  She had to be anxious, afraid, confused, and feeling totally vulnerable.  We were in a strange place with strange people wanting to do new and strange things to her…..and she was exhausted, completely spent by the trip from Waco to Dallas.

The next morning I stood beside the mini-van used to transport Marty, Max, Earl and their in-charge CNA to the rehab facility in Dallas.  They loaded the two men and for the life of me I couldn’t figure out how they planned to get Marty in the van.  

To her credit, Marty, when moved to the van, reached out to grab the bar on the door and tried to pull herself up to a standing position to get in the van. She tried and tried, I stood by, badly wanting to run over and help her.  There she was, three months removed from her 2nd devastating stroke, unable to use her left side, gamely trying to stand, to stand on her own, to make a stand for herself.  I stood off to the side and watched with tears in my eyes, watching as my wife tried to take care of herself.

She couldn’t, but I have never felt more pride in my wife.  Between the CNA and I we got her into the car, loaded it with three wheelchairs and oxygen and they drove off to Marty’s first day of theoretical recovery. 

I cried like I was watching my child go to school for the first day.   It wasn’t a good look.

Part I

We had celebrated Christmas, Marty's mother's 80th birthday and snow skied in the Sangre de Cristo Mountains. It was an epic voyage and an appropriate celebration of Marty's survival from her ruptured aneurysm. It had not been a particularly relaxing return trip out of the mountains and to Waco so celebrating wasn't on anyone’s priority list. Rest and relaxation with mind numbing comedy seemed to be the best way to celebrate this anniversary.

We had been to the doctor that day to see Great and Wise because Marty just didn't feel well and I was worried and anxious, a condition which had become all too familiar. Marty had been having vague symptoms of something, I just didn't know what, it is really hard to explain, I just felt like things weren't right. The good doctor checked Marty over and said she seemed okay but her blood pressure was a bit elevated. We settled in for our fabulous supper of grilled chicken and I felt a bit better just being relaxed in our home.

We finished eating in peace, silently. Marty was to my right in a large recliner, I glanced at her, then I looked again as I saw her slumping to her left. Marty's face was slack, contorted, drooping in a way that could only be one thing. She was drooling just a bit from the left side of her mouth and she tried to talk but couldn't. She had a look of confusion, but confusion mixed with terror. She intuitively knew what was happening, but didn't, all at the same time. On a scale of worst moments in our life, it was at the top, we both knew it was another stroke.

I took the empty plate from her lap, the food gone. I called 911 and tried to tell the person on the other end of the phone what was happening as calmly as I could. I simply could not believe I was standing there, asking for emergency help while the beautiful brain of my wife was starved for blood. Police arrived first; they do that in our community, quickly followed by an ambulance.

Marty began to revive a little as the EMT's did their thing, taking blood pressure, checking oxygen saturation levels, asking Marty questions, asking me questions, looking at her eyes, listening to her heart, all while she sat slumped in her chair. The slack in her face began to slowly recede and Marty began to recover a bit. I was afraid, confused, angry, anxious and probably on the verge of exploding. It's what I wanted to do, just blow up, blood, guts, and soft tissue everywhere, paint the walls of our house.

There was no question we were headed back to the emergency room at Providence Hospital. I just wanted them to hurry. They gently loaded Marty onto the gurney and rolled her out of the house. I had seen this before, I hated seeing it again. I had lived 50 years without seeing anyone I loved being put into an ambulance. Now it was happening again. I watched as they loaded Marty into the back and closed the doors. I stood outside of the ambulance watching through the windows in the doors as they hooked Marty up to IVs and locked her gurney into place. For a brief moment I thought I would just open the doors, push the EMT’s aside, unhook my wife and leave. I wanted, I needed control, I had none.

The upside of going to the ER in an ambulance with stroke symptoms is you get seen quickly. There really aren’t any down sides. They had Marty in an exam room with a doctor by the time I got there. It's a short trip from our house, less than 10 minutes, and in that time I called both of our children and Sue, one of our Persons (see earlier post).

The ER doc immediately ordered a series of tests, most importantly a CAT scan. Marty could no lover have MRI's because of the metal clip in her brain, so a CAT scan would be the most definite test to identify a stroke. Because Marty had previously experienced a cerebral hemorrhage the docs really did not want to give her blood thinners or clot busters. We were really kind of caught between a rock and a hard place; the best treatments for strokes were not really available to us.

Marty symptoms kind of waxed and waned while she was in the exam room. One minute she could still move her left arm and left leg and she was completely lucid. In some ways, at some moments, I could hear and see shadows of Marty before the first stroke. She was funny, she was sarcastic, she was cracking wise and she was trying to entertain. At other moments you could see the classic stroke effects, her face drooped, she was confused, her left side was limp, and her speech was slurred. The doctors, including Great and Wise who made a dash to the hospital, were fairly certain it was a stroke, but the CAT scan did not show bleeding (good), but it also did not show any signs of a stroke, yet.

Marty was stable, it was clear we were dealing with another catastrophic event, but she was stable. After several hours we were joined by Matt, Erin and Sarah, all making mad dashes from their parts of Texas to be with their Mom. It was another case where we just didn’t know, we just really didn’t know what was going to happen next.

They moved Marty to the Intensive Care Unit at Providence. We went to ICU as a precaution and because there were no other rooms available. Just so you know, the first of the year is a particularly sucky time to year to go into the hospital, it's much too crowded.

I went with Marty to the ICU and the nurse there promised me, swore to me she would personally care for Marty and watch over her all night. By this time it was about 3 in the morning. My children and I once again left Marty, once again we went home to try and sleep, once again I looked at my wife and hoped and prayed I would see her again. It’s hard leaving.


Part II

I went back to Providence Hospital early the next day with a real sense of dread. When I left Marty in the ICU just a few short hours ago no one knew definitively what we were dealing with and I didn’t have a clue what I would find when I got to the hospital. I knew it was good no one had called during the night. I thought I had learned a lot from the previous stroke and hospitalization. I really didn’t know what all I didn’t know.

Marty had made it through the night comfortably. She had been monitored and well cared for in ICU. I figured she would be in ICU for a while, I mean she had a stroke, right? The ICU meant she would be under the constant watchful eyes of the best nurses, right? Wrong. We waited for a regular room to become available and then moved. The constant watchful eyes became my eyes.

We moved to a regular room, we had more tests; we got the definitive results, a run of the mill ischemic stroke as opposed to the hemorrhagic stroke six months earlier. One with too much blood, one not enough blood. It was good to know for sure, it was awful to hear the truth.

All of this happened to coincide with one of the few times Marty’s regular doctor, Great and Wise, took a weekend away from work. His partner took call for him that weekend. Marty had been doing pretty well given her weakness from the previous assault, she was reasonably lucid, starting to try and eat and already beginning what would turn out to be a long, tedious, heart wrenching program of rehabilitation.

Then the pneumonia came.

Marty got really sick, really fast. They started her on two very powerful antibiotics. As she got sicker and as her blood pressure dropped the decision was made to move her back to Intensive Care. As I think back I’m pretty amazed at how fast all of this transpired and how truly clueless I was. I thought I knew about the medical milieu, I thought I knew how to deal with the hospital, I thought I was experienced. I really knew nothing about what we were facing. In this case my ignorance once again protected me. Sometimes if you can postpone reality it helps with survival.

In all of that has transpired with Marty there have only been three times when a doctor came to me and tried to prepare me for the worst. Great and Wise’s partner came to me, told me what was going on, what was going to happen, and then said, “I don’t know if she will make it.” The words kind of washed over my numb brain and left me speechless, a condition which just doesn’t happen to me. I simply didn’t know what to say or even how to react. I don’t think I really believed any of this was happening to us, it was all much too surreal.

ICU can provide a needed break to caregivers because in some, in this one, the visiting hours are limited and strictly controlled. The worst part of the ICU is you feel completely helpless and out of control, you are separated from the one you love. I was completely dependent on the snippets of time I got to spend in Marty’s room and the information the good nurses would and could provide. I hated not having constant access to Marty so I could see her condition with my own eyes, I did not like sitting outside of the ICU waiting for the next time the doors would open, and I did not like having to leave my wife alone through any of this time.

Marty’s blood pressure was and is today one of the best indicators of how ill she is. In this case it was precipitously low for her. To top it all off she was clearly allergic to one of the antibiotics she was taking and broke out in a horrendous rash all over her body. This seemed to bother Erin the most, she hated seeing the ugly, painful looking red splotches on her Mom and she hated that she just couldn’t get people to take it seriously.

The worst time occurred one afternoon when I was waiting for the appointed visiting time. I hated the waiting because I never knew what new calamity had hit Marty since the last visit, I hated the tension, I hated the surprises that waited, and I hated the suspense of waiting outside the doors. This day they were late opening the doors as all of the families waiting to visit patients were piled up waiting to enter the ICU. When the nurse came to the door she motioned for me to come with her. She explained the delay, Marty’s blood pressure had dropped so low they were afraid she wasn’t going to make it.

When I walked into her room Marty was very pale, her feet were elevated and they were pouring as many IV fluids into her as they could get. She was barely able to speak and recognize me. I bent over and whispered in her ear, “Don’t you leave me now.” She whispered very quietly, “I’m not going anywhere.”

Days later and the antibiotics started to beat back the pneumonia and Marty slowly began to wake up. I learned that if I stayed quiet and out of everyone’s way I could stay with Marty outside of the regular visiting hours. Occasionally some cranky nurse would make me leave, but for the most part they left me to my own devices and let me stay around and hold Marty’s hand.

The rash from the antibiotics still looked horrendously painful and irritated. Benadryl was given and cold packs were used to help relieve part of the misery. Marty’s overall somnolence was the only saving grace; she essentially was too weak to care and too tired to care. Being ill, having a stroke, is exhausting, and all Marty wanted, what she most needed was sleep.

Then one evening, kind of out of the blue, mostly because there were patients with a greater need for an ICU bed, Marty was moved. It was something of a miracle I happened to be there that night and watched and followed as they moved her out of the ICU. It was good to be leaving but I knew from experience we were leaving the comfort of constant medical attention and Marty’s family would need to be with her 24 hours a day now. I was already tired.

Part III

When they came and got her it was a surprise, we weren’t expecting the move. They came after visiting hours and it was dumb luck that I was there at the time. They moved her from ICU to a surgical recovery area which was really no more than a hallway because there was no room in the inn and they desperately needed the room in the ICU. Apparently the hospital is a very popular place at the first of the year. 

Marty had been in the ICU for about ten days. We were just a few days removed from pneumonia, an allergic reaction to antibiotics and precipitously low blood pressure. She had started to recover as much as one can from the assault of a stroke and it was time to move to a regular room. 

Instead, they moved Marty and her hospital bed to the corner of a little alcove in the recovery area just outside of the operating rooms in front of a nurse’s station; it was like she was in a darkened hall. She had two companion patients, two sleeping men right beside her with just barely enough room to pass between the beds. . The nurse saw he pissy side of Marty’s husband. It wasn’t her fault, she clearly drew the short straw and was charged with caring for these three displaced patients, but I needed an outlet for all of the angst, anger and emotional trauma of the last two weeks and I had found it, Providence Hospital. 

Marty, even in her drug and stroke haze, could see me seething. She mouthed and whispered the words, “It’s okay, I’m okay here,” as she tried to assuage my roiling anger. I kept saying to the nurse, “This is simply not acceptable, this is third world, this is absurd,” thinking if I could phrase the complaint just right she would correct this idiocy. I apparently didn’t find the right phrase. 

I am a wonderful complainer and crusader when necessary. I found it necessary and was in the administration office of Providence Hospital at first light the following day. I started with the nursing manager in pursuit of a goal to talk with the CEO of the hospital. As I said, I found a focus for all of this pent up rage and fear I had been collecting for two weeks and I was a man on a mission. 

I started at the bottom and ended up, not with the CEO, but with the Chief Operating Officer, Otis. By the time I met Otis the COO we were in Marty’s regular hospital room, out of the surgery holding area. Otis came by Marty’s room and tried to explain to a distraught husband why this good hospital would shuffle a patient away for storage as they had my wife. 

As I talked to Otis, extracting my pound of flesh, I realized most of my anger of the night before was initiated by a feeling of failure, a failure to protect and care for Marty. I knew I was doing everything I could to help her yet I couldn’t make sure she didn’t spend the night in the hall with three strangers. I felt like I had failed, I felt incapable of doing the one job I had in this deal, ensure Marty’s comfort and safety. The hospital’s overcrowding had removed one more level of my control.

All of us are imbued with the instinct to protect. Whether it’s to care for your spouse or protect your child or watch over an aged parent, our instinct it to stand in front of our most vulnerable and ward off danger. I was following my instinct; I was frustrated in my most basic need and instinct to care for Marty. She wasn’t in any real danger, but the move and how it was handled pricked the very essence of my maleness. 

In retrospect I realize the people in the hospital were truly between a rock and a hard place. They had done a lousy job of communicating and preparing, and it was cold and flu season and the place was full of flu and elective surgeries which had been put off in celebration of the holidays. In retrospect I know I hadn’t failed Marty and any sense of control over our situation was really no more than a relic of our past, the time before the strokes. The truth is control in the medical milieu is nothing more than a hope and rarely a reality. 

That day I did what I needed to do, purge the emotional bile in my system. Marty was safe, or as safe as one can get in any hospital recovering from a near death experience. Her words, “I’m okay here,” suggested her perspective was much better than mine, I just couldn’t hear anyone at the time.

We stayed in that room one night and in the afternoon of the next day Big John came to pick Marty up and start us on the next part of our journey, St. Catherine’s Sub-Acute Care Center.

Part IV

I remember sitting in the waiting area of our new temporary home, St. Catherine Center, a sub-acute care center in Waco.  It was adjacent to the hospital we had just left and was king of a way station for people too sick to go home, but not acute enough to be in the hospital.  

I remember waiting for her room; they were running a little behind in getting it ready.   I remember how cold she seemed sitting pale and hunched over in her wheelchair as I pulled a blanket tight around her shoulders and rolled her chair into the sun.  We both felt completely lost, afraid and alone.

It was the middle of January, 2006, and we had just moved from the hospital where Marty had stayed for about two weeks as the result of her 2nd stroke and a mortal fight with pneumonia.  We had just recovered from her disconcerting overnight warehousing in a surgical recovery area and I had just recovered from being massively angry and guilty from not being able to protect my very vulnerable wife from the overcrowding at the hospital.  We were now in a new environment and I clearly remember wishing I was smarter and more capable than I was.

We sat there for what seemed an eternity, alone, cold and pathetic.  It really probably wasn’t that long before a pleasant certified nursing assistant came and took us to Marty’s semi-private room that was to be Marty’s home, my home for an undetermined amount of time.  I hated, I still hate, undetermined amounts of time.

The room was gray, of course.  There were a couple of windows, a hospital bed, a phone, a television and a single overstuffed chair that folded out into the single most uncomfortable sleeping device known to man.  

Marty was exhausted from sitting in her wheelchair for the transfer from the hospital.  She was still incredibly weak and seemed so frail and it was the first time she had sat in her chair for an extended period of time.  A couple of attendants carefully moved her to her new bed and she slept.  I fretted, I paced, I stressed, sitting alone in the room with Marty while we waited for the physical therapist to come and evaluate her to determine our next steps.  

The therapist eventually arrived and I felt like I was being evaluated as she pushed and prodded and bent Marty, it felt kind of like a trial. I wish I knew then what I know now, I could have been a better advocate, but back then I was hoping against hope that Marty would walk again, she would be able to care for herself again, she would regain some of what she was before the 2nd stroke.  I was naive and didn’t understand where life had taken us.

Marty rested for a couple of days and started taking antibiotics for a urinary tract infection.  I slept at night next to her in the bed from hell.  Marty never slept alone at St. Catherine’s or for that matter anywhere.  She was just too vulnerable, people with brain injuries need an advocate, I eventually became a good one, but that was much later.

Our kids did the most remarkable thing any 20 something’s could do; they regularly and willingly spent the night with their mother and gave their father respite.  As I look back at what Matt and Erin did, what they willingly did for their mother, for me, I’m amazed.   We all were spending the night stealing and stacking plastic encased pillows on an awful bed without any privacy watching over your very brittle mother.  One word and I hope they know, amazing. 

The hours we spent at St. Catherine’s morphed into days and the days folded into weeks.  I was with Marty most of the time.   The embarrassing upside to this is that I saw every episode of Dawson’s Creek. When I wasn’t there our children were, or my family, my father even took a turn encouraging Marty on the arm bike.  The week days were filled with therapy.  

Physical and Occupation therapy were done a simultaneously in a large room filled with tables, mats, poles, crutches, slings and other broken people trying to heal.  They worked with Marty sitting, trying to get her to touch their hand as they moved it around her, that helped her balance.  They put her in a swing and pushed her back and forth to work on her equilibrium.  They had her use an arm bike and they slowly started training me, showing me what I could do and what I shouldn’t do.

I was like a father watching his young child playing baseball for the first time.  I encouraged, was discouraged, I was proud and at times a bit embarrassed by Marty’s inability to stay awake and focused on the assigned tasks; it was like trying to get your child in the outfield to quit the daisy hunting.  I didn’t know, I didn’t understand how much Marty needed to sleep, to rest, to recover.  It took me three years to understand how hard and exhausting everything was for Marty.

I went with Marty everyday for speech therapy.  Again, cheering her on, hoping she would remember things from the day before, and hoping that the electrodes fixed to her throat would help her to do something as basic, as simple, as swallowing liquid without choking.  Therapy was the same thing every day of the week, the work didn’t seem much but it exhausted Marty every day.

One of the things I didn’t understand from the first stroke was the adverse affect strokes have on swallowing.  It makes sense because her whole left side had been affected  and because of  that swallowing regular fluids or regular food would cause chocking or aspiration.  Stroke patients, based on the results of swallow studies, x-rays while eating barium coated food, get either regular food, soft mechanical, or pureed; all self explanatory. 

Marty ate pureed food and drank thickened fluids, the texture of the food helped with the swallowing and choking.  The food looked awful.  There would be the brown food, the green food and the orange food.  The drinks were all as thick as honey, the water looked like paste.  Marty ate and drank and never complained, not one time, not one day.  She ate for survival and she drank whatever I put in front of her.  I think one of the most remarkable parts of Marty’s recovery was her ability to eat things that were to the eye, inedible.

The undetermined amount of time felt like an eternity, a stay at the Hotel California.  When the therapy began to wane because Marty wasn’t making enough progress, because they knew Marty wasn’t going to physically progress much more, time virtually stopped. That was when the speech pathologist first mentioned Pate Rehab in Dallas.

On our last afternoon at St. Catherine’s, in the blowing April wind, I helped Marty into a van taking her to Pate Rehab center in Dallas.  We started on the next step in our journey; I packed for an undetermined amount of time.

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