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The first homecoming

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May 18, 2015, was the day that we had been thinking my dad would be discharged from the hospital. Instead, I spent a significant portion of that morning speaking with Dad’s caregivers about his deteriorating condition. In short, he had bacterial pneumonia and severe sepsis with acute organ dysfunction. His medical team was administering several antibiotics, but there was no way in which his cocktail of meds could take care of the amount of infected fluid (pus) in his chest. The doctors recommended that they reopen his chest and wash out the infection. Of course there were some risks, but the alternative was dire. What I didn’t know until May 2016 was that he was also at risk for acute kidney injury.

015311b4f046096e6baca1e8f21e99a56ab3538076Dad’s cardiologist stopped by and performed a Transesophageal Echocardiography (TEE). The TEE was necessary to ensure that Dad’s new bovine heart valve wasn’t harboring any infection. I hadn’t met her before and she surprised me when she said, “I didn’t want him to have this procedure. He should be home working in his garden.”  My parents never heard that she had had reservations about the more invasive procedure. Lesson learned: regardless of the surgeon’s reputation, have the physician who made the original surgical referral (in this case, the cardiologist) review the surgeon’s recommendation.

His washout surgery was scheduled for 6:00 P.M. that night, but the surgeon’s earlier procedures had run long, so he opted to wait until the next morning. Although it was a simple procedure, he didn’t want to perform surgery with only a skeleton staff on hand should something go wrong.

On May 19, Rhoda and I arrived early to the hospital. My father’s surgery started at 8:00 A.M., and I received a call shortly after 9:00 A.M. informing me that the surgery was finished. Around lunchtime, we received our first visit from Pastor Don, a pastor from my parents’ church. Before he saw my father, Don visited with my mother for a few minutes before her discharge.

During Mom’s discharge, I learned that she could not be alone or drive for at least 30 days, at which time she would undergo a neurological assessment. I was glad that she was home, although some of our conversations were pretty unsettling. She often could not remember what we asked her or what we or she had just said. To say the least, I was cautiously optimistic about her recovery.

On Wednesday, May 20, my mother and I returned to the hospital to see my father.  Rhoda had postponed a trip to Wisconsin to help me, but now she really needed to leave. She stopped by the hospital on her way home. Although my father’s breathing tube had been removed the previous day, speaking was still a little difficult. He managed to call her “a blessing,” when he said good-bye.

Within hours after Rhoda’s departure, Dad was transferred from CTICU back to the fourth floor. We were pleased that he was well enough to transfer, but he wasn’t there very long before it became very apparent that he was extremely disoriented. The fourth-floor charge nurse was more than a little annoyed that he had to assign an aide to my father’s room to ensure that he wouldn’t try to get out of bed or remove some vital tube.

I had had the foresight to take my work computer with me when I hurried to Temple five days earlier. I had been able to do my job in the intervening days even though I was away from my office. Now, however, I needed to return to my home and my office for a couple of days. I also needed to see my physical therapist—I had had surgery myself in March and was still undergoing physical therapy. Lucky for me, my dear husband agreed to come to Temple to relieve me for a couple days. He and I formulated a plan of coverage for Mom until my father was discharged.

On May 21, I worked from my parents’ home until about 8:00 A.M. My mother’s friend Marilyn stopped by to stay with Mom until Stan arrived. Stan and I met in Cameron, Texas, to exchange keys and information. I arrived at my workplace shortly after noon and felt a little guilty for leaving my mother and Stan to contend with my father’s delirium. My sense of guilt was short-lived, however. After being home for an hour or so, I noticed that my house was infested with fleas. Our cats never go outside, but we learned that this year was especially bad for fleas. We frequently employed a pet sitter and assumed that some fleas had hitched a ride with her. At this point Stan and I laughed about this latest situation, wondering what else could go wrong. After flea traps and expensive oral medication for the cats, we finally vanquished the fleas.

juggling_ballsDuring my five days in Temple I had been living in a sort of surreal and parallel universe. When I arrived on May 15, I had assumed that my father’s discharge was imminent. My big unknown was about what was in store for my mother. I had not anticipated that my mother would be discharged first. Now, in addition to figuring out how to care for my recently independent and active parents, I had to start thinking about my job and living away from my husband. It was a daunting juggling act—one I hoped would be over soon.

I think we made a mistake

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Whenever I’m in Temple, Texas on a Sunday, I attend my parents’ church and sit in their pew. Like so many churchgoers, my parents sit in the same pew every Sunday. I felt compelled to attend church on May 17, 2015, to let our pew friends know what had happened to my mother. On the way to the church, my friend Rhoda and I stopped by the hospital to check in on my parents.

sadWe started in the north tower to see my father. He was sitting up in bed and looked very frail. He seemed to have weakened significantly from the previous evening. He looked up at me and said something that I couldn’t understand. When I asked him what he said, he said, “I think we made a mistake.”  I put on my positive face and told him that we couldn’t go back—the surgery was behind us. All we could do was look forward. Rhoda and I visited with him for a more few minutes and then went to see my mother in the hospital’s south tower.

According to her doctors, they planned to move my mother from the Medical ICU (MICU) to “the floor” sometime that day. Rhoda stayed with her while I attended church. Ironically, my mother was having trouble remembering that she had to stay in bed. Her stroke was doing a number on her short-term memory.

Because Scott & White is a major employer in Temple, many of the parishioners work for the HMO in one way or another, including our three friends who sit in the pew behind us. As you might expect, they were very disturbed to learn what had happened to my mother. One of these wonderful women, Sue, would become our guardian angel. When I left the church to return to the hospital that day, I felt a little calmer. Church was definitely where I needed to be that Sunday morning.

My sense of calm was short-lived, however. As I pulled into the hospital parking lot, my phone rang. I could tell from the caller ID that the caller was Mallory, one of the surgeon’s PAs. She told me that she needed to talk with me about my father’s declining condition, which was serious enough to move him from the fourth floor back to CTICU on the second floor. As I walked out of the second-floor elevator in the north tower, my phone rang again. It was Rhoda calling to tell me that my mother was being moved from the MICU on the second floor to the fourth floor in the south tower.

There was a reason why my father had looked so weak and frail that morning. His white blood cell count had spiked from 15k (a little higher than normal) to 43k (amazingly high). It was such a large spike that the resident indicated on his chart that the results were frivolous, and then ordered follow-up bloodwork. Following the additional lab work they learned that he now had pneumonia, a staph infection, and a couple of other infections.  His white blood cell count was now 45k and his doctor for the week described his condition as serious.

 It was at this moment that my education about the health care industry started in earnest.

Spell “world” backwards

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After ensuring that my parents’ house was secure, I tried to think about sleep. I had been running on adrenaline for seven hours and I was determined to be at the hospital when my mother woke up. At 2:00 A.M. my parents’ house phone rang, and it was my father. Evidently, he couldn’t sleep either. He wanted the contact information for my mother’s nurse. ICU hospital rooms don’t have telephones—actually, most of them don’t, but I digress. Each room has a special access code that family members can use to contact the nurse. I told him that I had that information, but that it was in the car. I had to laugh when he told me he’d wait while I retrieved it. I assured him that I’d be there in 3-1/2 hours and promised to check in with him shortly after seeing Mom.

During my road trip to Temple, the medical professionals told me that with therapy my mother would eventually regain some of her speech. Not knowing what to expect, I was at the door of my mother’s room at 5:30 A.M. Drew, the nurse, was still there and said that we could now wake her. Relief overwhelmed me when she opened her eyes and said, “Hi, Melody.” She was able to speak, although she was very confused. I had never realized what a stroke was like from the patient’s side. She had no pain, no idea why she was there, no memory of how she got there, and  she was pretty certain that she was fine. However, when I saw her CT scan, it was obvious to me where the bleed had occurred.
worldShortly thereafter, a steady stream of doctors, fellows, residents, therapists, aides, and who knows who came through my mother’s door. My California-born mother sometimes has a difficult time understanding some of her native Texas friends. This teaching hospital is teeming with personnel from across the globe, most of whom speak rapidly and are very polite and soft spoken. I finally asked them to let me translate all of their requests. While testing her cognitive impairment, they asked her to spell “world” backwards. After two hours of sleep that followed almost 24 hours awake, I was pretty sure that I couldn’t spell it myself, and would probably fail their tests.

Meanwhile, over in CTICU in the north tower, my father told his surgeon that his wife had suffered a stroke and was in the south tower. I don’t know whether the surgeon breached any hospital protocol, but he arranged for a nurse to take my father to my mother’s room. At 12:30 P.M., he was wheeled in and it was a great reunion. How I wished that I had the presence of mind to photograph the moment with my phone. The two of them touched their fingers that sported the pulse oximeters. It looked like an ET moment when their two lit fingers touched. How I wish that either one of them could recall this meeting.

I went back to my parents’ house so that I could phone family and close friends of my parents. Some of the neighbors saw my car and called for an update on my mother’s condition. After witnessing the collection of emergency vehicles the night before, curiosity and concern were running high.

Shortly after 1:00 P.M., my dear friend Rhoda arrived from Houston. She had called me early in the morning to see if she could come to Temple for a few days to help out. I surprised us both when I quickly accepted her offer. I wasn’t sure how she could help, but with my mother in the hospital and my father due to be discharged soon, I was pretty certain that the next few days would be hectic and that she’d be able to help.

Turns out, she was a godsend.

Trauma Patient Ohio

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After hearing from my parents’ neighbor that he had called 9-1-1, I paced the floor for 30 minutes. The hospital was just a short distance from my parent’s house, so I should have already heard something. Maybe the ambulance didn’t show up. I called their house, but there was no answer. I called our friend again and he asked me for an update. I told him that I was calling him for an update. He said that she should be at the hospital.

At 7:51 P.M. I called Scott & White Emergency Department (ED) and asked for the status of Mary Locke. I was informed that they had no patient by that name. I hung up and phoned our friend again. He said that he would call a neighbor and get back to me. Evidently a couple of ambulances and a Little River-Academy fire truck had pulled up to my parents’ house, which had attracted the attention of some neighbors. The next-door neighbors saw my mother escorted out of the house, placed on a gurney, and put in the ambulance.

ohioWith this new information, I called Scott & White ED again and asked about the status of my mother. Again they told me that they had no such patient. I informed her that neighbors witnessed a Scott & White ambulance drive off with my mother on board. Because my parents’ house was less than five miles from the hospital, I assumed that it was her destination. It was then that she asked me about her symptoms, and as I started to explain, she said, “We have a Jane…” I interrupted her and asked if she was saying that my mother was a Jane Doe. She said that my mother had not been able to identify herself and she was admitted as Trauma Patient Ohio.

I left the house for Temple just a couple of minutes later, but I was fuming. Somewhere between the 9-1-1 call and the hospital, identifying information about my mother was lost. What’s worse is that even though she was having a stroke, she carried her purse with her when she left the house. In it was her wallet with her Medicare card, Texas driver’s license, and Scott & White Senior Care card. The ambulance drivers and the ED staff didn’t check her purse for any identification. Had they done so, they would have been able to access her medical history and medications.I questioned a hospital administrator a few months later about this oversight and he surmised that privacy might have been the reason for not checking her purse. When I asked if they checked for IDs of unconscious victims, he shrugged.

I left home at 8:45 P.M. After about 30 minutes I decided that I should call the hospital and give them my contact information, which the clerk gratefully accepted. As I approached Chappell Hill, I received a call from the hospital. My mother was being admitted, and Drew, her nurse gave me an update on her condition and also told me where I could find her when I reached the hospital. I also received a call from the ED doctor who had treated her, and the prognosis was depressing. It seemed that my mother had suffered a stroke in the part of the brain that controls speech. You’d have to know my mother to know how devastating this news was to me. She’s one of the most articulate people I’ve ever known. Among other things, she’s been a politician, a political activist, and a lobbyist. I couldn’t believe that God would deprive her the ability to communicate. However, my mother can write. When I asked about writing, I was told that all forms of communication are controlled by the affected area. With this depressing news, I continued driving. I still had 100 miles to go.

I finally arrived at Scott & White at 11:45 P.M. After checking in with the guard, I made my way to Medical ICU in the south tower. I found my mother and the nurse in room 249. Drew asked that I not wake her. She had been very agitated and she was heavily sedated and finally sleeping. He said that I could sleep on the couch in her room if I wanted. I planned to take him up on his offer, but I thought that I should check in on my father first, who was in the north tower.

It was now midnight and I was praying that my father was asleep. How do you tell someone who just had open-heart surgery that his wife just had a stroke? As luck would have it, the light was on in his room and he was sitting up in bed. I don’t remember what we said. All I remember is that when I told him that I was going to sleep in the hospital, he told me that I needed to go to his house to ensure that the house was secure.

Technically, it was now Saturday, May 16, both of my parents were in the hospital, and I was 160 miles from my husband. It was one of the few times in my life that I wished I wasn’t an only child.

The procedure went well

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On May 6, 2015, we arrived at the hospital before 6:00 A.M. and found our way to Day Surgery. Another patient—a woman who appeared to be in her 70s—was also being admitted for the same procedure. The surgery preparation was typical and my father was wheeled away to the OR around 7:30 A.M. My mother and I waited in the frigid Day Surgery Waiting Room for about six hours, the expected duration for this procedure. We kept in touch with family and friends via social media and email, and we kept tabs on my father’s progress by watching the status bars on the large screen in the waiting room. My family and friends are spread across the country like buckshot from a sawed-off shotgun. Until this surgery, I underestimated the importance that Facebook would have on our ability to communicate with loved ones.

statusVideo

We anxiously waited for the periodic calls from the OR, telling us that the surgery was progressing well and that my father was doing fine. We were relieved when the surgeon, Dr. Sai, finally met us and told us that the procedure went well but that the next 24 hours were critical for strokes and blood clots. We went to my father’s room and were thankful that he was able to respond to simple commands from the nurse. His nurse, Ursula, was an interesting personality. She hailed from Transylvania and didn’t want to grow old. At the time I wasn’t thrilled to hear about how she didn’t want to become like the people in her care, but I grew to really like her and chalked up her comments to cultural differences.

Early the next morning I stopped by the hospital to check on him and say hello, and then drove back home to Houston, believing that all was well. Later that day, my mother called to tell me that my father was very disoriented; among other things, he saw bugs everywhere. Evidently, the woman we had met prior to his surgery was in the room next to his and she also experienced a couple of days of delirium after surgery. It was a small comfort to know that another patient was also struggling with delirium, although a heads-up about post-anesthesia delirium would have been nice. The passage of a couple of days and a couple doses of Haldol, and he was back to his normal self.

Mother’s Day was May 10 and my husband and I spent the weekend in Temple visiting with my parents. My father was still in the ICU but was moved to “the floor” soon after my husband and I went home. My mother called me on Monday to tell me that while she was away from the hospital for lunch, my father fell when he got out of bed to fetch the urinal. The nurse had neglected to return it to his bedside after repositioning him. We were concerned that the fall would extend his 7 to 10-day stay by a couple of days. Although I was annoyed with him for getting out of bed, I now wish that I had a dollar for every time a nurse or other professional left objects out of his reach–including call  buttons. Although my mother and I admonished him for doing it, we’d have probably gotten out of bed, too.

On May 13, my mother told me that he’d been walking the halls with a front-wheeled walker and that therapists were stopping by each day. He seemed to be improving, and she and my father thought that he’d be discharged by now. As my father’s discharge date seemed to approach, the physical therapists, PAs and other hospital personnel recommended outpatient physical therapy, a notion that my parents quickly rejected. Based on these conversations, his length of stay in the hospital, and comments from the doctors and hospital staff, my parents surmised that my father’s discharge was imminent.

On Friday, May 15, my mother was under a lot of self-imposed pressure to prepare the house for my father’s homecoming. She had no idea that in a matter of hours two separate events would occur that would rock their world (and mine).

A seemingly simple decision

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My Dad. Most people used to think that he was a decade younger than his chronological age. Following his retirement, he and my mother bought 15 acres in Grand Junction, Colorado, raised sheep and alfalfa, and enjoyed both cross-country and downhill skiing. They were card-carrying members of the OFOS (Old Farts on Skis) club and enjoyed camping and other outdoor activities. In 2004 they moved back to Texas and settled in Temple, roughly 35 miles south of Waco.

He and my mother loved gardening and tending to their acre-sized lot and the house that they had designed.

1964-01
1964

However, at 86 he was beginning to feel winded, which interfered with his ability to lead the active life he enjoyed. His cardiologist recommended an aortic valve replacement. At first my father thought that he would have Transcatheter Aortic Valve Replacement (TAVR), which replaces the valve without open-heart surgery. (According to Baylor College of Medicine, “Most people who have this [TAVR] procedure are older, usually in their 70s or 80s, and often have other medical conditions that make them a better candidate for this type of surgery.”) However, after a 15-minute visit with the surgeon, my father was sold on the open-heart route.  His surgeon thought that the open-heart route was best, ran a battery of tests, and recommended that my father take the more invasive route. According to their test results, this surgery posed only a 3% chance of mortality for my father.

With odds like that, how could he say “no.” After all, they’re professionals; they know what they’re doing. He’d be fully recovered before he and my mother started harvesting melons and cucumbers from their garden in July.