Chugging along the rickety tracks to rehabilitation

May 2, 2018. The month of May seemed to be getting off to a good start. According to Mom, she had been successful in getting Dad to walk a little around the house. My heart almost stopped when she told me that she also took Dad to his barber for a haircut. Although you can park in front of the barber shop, it’s not exactly an accessible trip from the parking lot into the shop. Had I known in advance about this excursion, I would have been a nervous wreck worrying that he might fall while negotiating the front walkway. I was glad that I didn’t learn about this outing until after the fact.

chugginCross3When I spoke to Mom on the following day, she told me that Dad had had a good day in physical therapy and that they both liked the new therapist.

I had been in Johnson City for a workshop and had planned to spend the night there. Because I felt like I was coming down with a cold, I decided to drive to my parents’ house tonight instead of tomorrow morning. I wasn’t happy to be visiting them when I was sick, but Mom was looking forward to seeing me that weekend, sick or not. I’d had to be vigilant with my hand washing to ensure that I didn’t spread my cold germs around their house.

May 11. Mom is a meat-and-potatoes gal from way back, so for Mother’s Day, I thought that I would serve her filet mignon. I purchased some nice steaks and side dishes from Omaha Steaks for our early Mother’s Day dinner tomorrow night.  Shortly after Stan got home from work, we drove to Temple for the weekend.

chugginCross1When we arrived, I told Dad that I had taken care of tomorrow night’s dinner. He then told me that he had already planned Mom’s dinner, which surprised me. For many years, we had had an understanding that Mother’s Day dinner was my responsibility, although we often discussed the menu and the logistics of the meal. Now that he was confined to a wheelchair, I had assumed that he would not be able to share in the dinner preparation. Because I wanted to grill the steaks, a task better done in the evening, we agreed to have the steaks for dinner on Saturday and the dinner that he had planned on Sunday for the midday meal.

May 13. While Mom and I attended church, our husbands played cribbage. Whenever we were in Temple, Dad did not take his diuretics, which concerned me. In addition to his not taking the pills, he didn’t seem to be following a renal diet or curtailing his sodium intake. Because any mention of pill, diet, or walking seemed to ignite an argument, I tried to limit vocalizing my concerns during this weekend.

Dad had told me that he would need my assistance with the preparation of today’s Mother’s Day meal, which was an understatement. Although he had planned a nice menu for Mom’s dinner, Mom and I ended up preparing the meal. In addition to shrimp cocktail, barbequed spare ribs, green beans, and twice-baked potatoes, Dad also planned on Mom’s strawberry pie and Jell-O salad. We had a full weekend of eating high-on-the-hog. Unfortunately, as I had suspected, Dad did not take any diuretics while we were there.

chugginCross2May 14—17. Dad attended physical therapy today and would do so again on Thursday, three days later. He didn’t get out of his wheelchair on the days between his sessions; however, he felt especially positive after his Thursday session and said that he was getting ready to get rid of the wheelchair. I was hopeful that he had changed his attitude about exercising between sessions and that he was becoming inspired to get better.

May 21. Because his physical therapist did not come to work today, Dad’s therapy session was canceled. Unfortunately, he didn’t take the initiative to walk around the house either. When Mom tried to get him to walk the next day, he said that he was too stiff to walk. If I had been sitting in a wheelchair for 12 hours a day, I’d be pretty stiff too. I hated that wheelchair.

chugginCross4May 24. I suspected that Dad didn’t have the greatest physical therapy session today. According to Mom, Steve, the physical therapist, lectured Dad about the need to exercise between his physical therapy sessions. I hoped that Dad would listen more to Steve than he did to me. Dad had been out of the rehab center and had been attending outpatient physical therapy since mid-April and I could not see much of an improvement in his mobility. If anything, it seemed to be getting worse.

May 26. I had not planned to go to Temple this weekend, but something in Mom’s voice during our last phone call prompted me to change my mind, and Stan agreed that I should go. When I arrived, Dad was in his wheelchair, trying on a pair of new shoes that had just arrived in the mail. The shoe size was larger than what he had been wearing, but he could not get them on his feet. I was appalled by the level of exertion that he expended trying to get the shoes on his feet. You would have thought that he had just finished the four-minute mile. When I later asked Mom if he had been taking his diuretic, she said that he had had not taken a pill in quite some time.

chugginCross3My parents had planned another trip to the barber later today. Instead of taking him in Mom’s LeBaron convertible, I decided to drive him in Stan’s new SUV. We were able to get Dad into Stan’s car, but the trip from the car to the barber chair was a bit harrowing, and we practically dragged Dad the last couple of feet and into the chair. Fortunately, because it was a holiday weekend, the barber didn’t have any customers and was able to assist us. More harrowing than the walk in from the car was the walk back to the car. Once again, the barber saved our bacon and was able to help us maneuver Dad back into the car. The barber and I could barely get Dad safely to and from the shop. There was no way that Mom would have been able to manage Dad without me. Because he had been able to negotiate the walk on May 2, it seemed that his condition was worsening. I couldn’t understand why Dad and his physical therapists were not alarmed.

I could tell that Mom was exhausted, and I was glad that I was there to help her. I also decided that I was going to help Dad to walk. He was able to walk 88 feet once today, but the next two times, he had to stop and rest for a moment at the halfway point.

chugginCross1I asked him if he had to stop because of pain (from the hip surgery) or because of exhaustion. He admitted that it was the latter. We proceeded to have a very civil and productive discussion about his condition. Not only was he easily exhausted, but he was showing signs of severe fluid overload. In addition to having swollen extremities, his legs were weeping fluid. I begged him to take the diuretics, and I told him that if he would, he would regain some of his strength and endurance. He promised me that he would start taking the pills on a daily basis.

The next morning he took his pill, and I left feeling more optimistic than I had in quite some time.

May 29. Dad had his assessment today during physical therapy and he was approved for another 30 days of therapy. Although this seemed like good news, it meant that he was not well. Also, his next appointment was not until June 7, which meant that he had a 9-day gap between therapy sessions.

According to Mom, Dad forgot to take his diuretic today.

chugginCross4June 18. According to Mom, Dad had been taking his diuretics on most days since I saw him on May 26. However, he found many reasons for not taking the pills, like trips to physical therapy. Today he didn’t take a pill because he spent a few hours at the dermatologist having a biopsy for skin cancer on his head.

Stan and I left Houston to spend a week in southern California with his family. While we were there, we also visited with some of my cousins. I wanted to call my parents every day, but the time difference posed some challenges; however, I was able to call them a few times. According to Mom, Dad was taking his diuretics as he had promised me. I was encouraged and looked forward to seeing a significant improvement when I returned to Temple at the end of the month. By that time, he would have been consistently taking the diuretics for three weeks. According to Mom, his legs had stopped seeping, so he was already on his way to reversing his dangerous fluid overload condition.

June 29. Stan and I arrived in Temple at 6:00 P.M. Instead of being pleased with Dad’s progress, it seemed to me that his progress had stalled. His legs weren’t seeping fluid, but his whole body still seemed very swollen. He also wasn’t wearing shoes because he couldn’t get them on his feet. When I asked Mom when he had last taken a pill, she said that she didn’t know.

I tried reasoning with him again about walking and taking the diuretics, but he lobbed excuses at me faster than Serena Williams. When I asked him to walk, he said that he didn’t want to at that time. When I asked if he wanted to get out of the wheelchair, he said, “Not if it means that I have to walk four times a day.”  I didn’t know how to respond. My mother was exhausted from trying to care for him, their 3,400 sq ft home, and their acre of property. I wanted him to get better and stay in their house if that’s what they wanted, but not at the expense of Mom’s health.

chugginCross2While Mom and I attended church on Sunday, July 1, Stan observed that Dad sometimes spontaneously drifted off to sleep while they were playing cards, which was also a symptom of fluid overload. He would sometimes fall asleep at the dining room table at the end of a meal.

I was appalled to learn that Dad wanted to install a ramp off of their patio, presumably to enable wheeling the barbeque grill onto the patio, but I suspected that it had more to do with wheelchair accessibility. He kept saying that he looked forward to activities that required him to walk, but it seemed that he was preparing the house for life ahead in that wheelchair. Mom told me that he wanted to walk again, but you couldn’t prove it by me.

Another fall? Is history repeating itself?

2ndFallFeatureDuring the first weekend of March 2016, our friends Mike and Rhoda visited my parents. The visit went well, and Dad walked around the house with little or no assistance from his cane. We were all pleased and impressed with his progress and felt that his recovery was nothing short of miraculous. Unfortunately, a couple of days after they left, Dad tripped while stepping into the sunken living room. This fall led to some back pain and some minor setbacks.

march_2018As March 2018 approached, these same friends asked if they could join Stan and me during one of our weekend trips to see my parents. My parents love our friends and were thrilled that they had time for a weekend visit. Not only did I look forward to Rhoda and Mike’s company, I hoped that they might be able to provide me with a little perspective. Dad and I are very much alike, and we have a history of digging in our heels. For the past few months, he and I had been locking horns about his diuretics, but perhaps I was too critical of his decision not to take the drugs as prescribed or on any regular basis but only according to his own rules, including not take them when guests, including Stan and me, were staying at the house.

The six of us quickly fell into our routine of happy hour and card games, and we spent many hours catching up on the activities of the past few months.

pegOutCross1Unlike during the visit of two years ago, Dad’s gait seemed unsteady to me, and I practically held my breath as he walked around the house. His legs were swollen, and I was pretty sure that the reason was that he was retaining a significant amount of fluid. I’m far from an expert on the subject, but I could not help but believe that all this fluid in his legs was affecting his gait, and perhaps his center of balance. As I had feared, because my parents had company for the weekend, Dad was not taking the diuretics. I also wasn’t certain when he had last taken a dose or how often he was taking them.

Dad and I are usually the first ones up in the morning, and when I saw him in the kitchen on Sunday morning, I was distressed about his appearance. Overnight, it seemed as if his face had puffed up. I told him that his appearance concerned me. He dismissed my concerns and said that he would not take the pills this weekend.

tubefeed3Fortunately, or unfortunately, my concerns were validated by my friends when they told me that they also thought that Dad seemed unsteady. My husband, who can usually talk me down when I’m overly concerned, didn’t help much when he said that he was also worried about Dad’s gait and the swelling in his legs.

If Dad had had serious renal failure, he wouldn’t have lasted two weeks without dialysis. As the nephrologist had told us, Dad’s condition was borderline. His kidneys were working, but not well enough to eliminate enough fluid, and it was slowly accumulating around vital organs and now in his extremities. The more that I pressured him to take his pills, the more we argued and the more he claimed to be fine.

The following Saturday, Stan and I had been asleep at our home in Houston for an hour when we were awakened by the telephone. Phone calls at 11:00 P.M. have seldom delivered good news, and I strained to hear the answering machine, hoping that it was a wrong number. Unfortunately, the voice that I heard was Mom’s, and I sprang from the bed and raced to the other room to answer the phone.

fallGuyShe had just returned home from the Scott & White Hospital, where she had left Dad. It seemed that shortly before 7:00 P.M., Dad had fallen while stepping up from the sunken sunroom to the family room. Although the sunroom was carpeted, the family-room floor was a hard-tiled surface. Dad was in a lot of pain, and Mom had called 911. X-rays showed that he had broken his hip in the socket and would require surgery to insert two or three pins. His surgery was tentatively scheduled for the next day, Palm Sunday, at 1:00 P.M. Perhaps I’m a cynic, but the idea of surgery on a Sunday set off alarm bells in my head. I couldn’t shake the feeling that the B Teams perform surgery on Sundays.

Stan and I had had a long day and had consumed some alcohol during the evening, so I wasn’t about to drive to Temple. I was shaken after hanging up from my phone call with Mom, and I took a sleeping pill to help me return to sleep. Although I needed to get up early to drive to Temple to be with Mom during Dad’s surgery, I also needed to get back to sleep. I suspected that it would be prudent of me to take my work computer with me. A broken hip at 89 sounded like bad news to me and I feared what might be in store for us as a family.

 

Tap dancing along the slippery slope to recovery

Before Dad’s hospitalization, his organs had been in pretty good working order. However, the aspiration and sepsis events impacted his kidneys, which resulted in his dependence on dialysis. To say that my father hated dialysis is an understatement. He hated the inconvenience of it, how it interfered with his ability to travel, and how much it tired him. In addition to the four-hour sessions that impacted his daily life, he also had issues with the dialysis center. Although the place was spacious and had nice dialysis beds, Dad’s opinion of the facility changed drastically when he moved from being a dialysis catheter patient to a fistula patient.

tappingCross1Because of the potential for infection, only RNs can work with dialysis catheter patients. However, techs are trained to hook up dialysis patients who have fistulas. My father quickly learned that not all techs are created equal. Dad had a problem with bleeding, which could be reduced or avoided if the tech took care when removing the needles at the end of the session. A couple of careless techs caused bleeding that the nurses at the dialysis center could not stop within 60 minutes, which was their threshold for calling 911. As you might expect, going to the emergency room significantly increased the time required to solve the problem. During one of Dad’s trips to the ER, the paramedics stopped the bleeding during the two-mile trip to the hospital, but because of their protocol, they still had to take him into the ER, and blood was drawn as part of the normal procedure (ironically, to ensure that he had not lost too much blood). If that wasn’t enough, my parents paid a $200 co-pay for the privilege of visiting the ER.

I generally heard repeated versions of Dad’s war stories during each phone call and visit to my parents’ house. I inherited many of Dad’s unfortunate circulatory traits, so I’m pretty sure the bleeding episodes would have also left me cold, if not bitter. It didn’t help that the decorum of the techs seemed a bit unprofessional and cavalier, and sometimes inappropriate. During my few visits to the dialysis center, I wondered if similar behavior by some of the techs might warrant a call to the Human Resources department.

tappingCross3Several years earlier, my mother had been the president of the Colorado Mesa University (CMU) foundation. Their annual meeting was scheduled for November 2017, and past presidents usually attended this meeting. Dad wanted Mom to attend, and he wanted to accompany her, which meant that he would need dialysis during their trip. CMU is located in Grand Junction, Colorado. Although Grand Junction and Temple are similar in size and population, I suspected that Grand Junction would not have a dialysis center that could match Temple’s. According to my parents, I couldn’t have been more wrong. Although it fell short in square footage, it whomped the Temple facility in the professionalism of its staff. When Dad asked one of their techs why they didn’t have chairs, she replied that she wouldn’t have had time to sit even if they had chairs. This environment contrasted sharply with that of the Temple facility.

I wasn’t surprised when Dad started needling Dr. Issac, his nephrologist, to test him to see if he still needed dialysis. Unlike most of the dialysis patients, Dad often had only the minimum amount of fluid removed during his dialysis session. Although Dad’s tests showed that he still required dialysis, Dad was able to convince Dr. Issac to reduce the time from 4 hours to 3-1/2 hours. Dad eventually got the doctor to reduce the time to 3 hours, which enabled him to get home before 11:00 A.M.

tappingCross2Because Dad received co-pay bills for physician visits to the dialysis center, he decided to take advantage of his VA benefits. Temple is near Fort Hood and has a large VA facility not far from my parents’ home. During Dad’s first visit to the VA’s nephrologist, that doctor allegedly told Dad that he didn’t think that Dad needed dialysis, which alarmed me. Dr. Issac had been treating Dad for two years, and this VA doctor had seen Dad for 15 minutes.

Now that Dad was convinced that the local dialysis center was less than stellar, he despised it more than ever and embraced the comments of the VA doctor. Armed with these convenient comments from the VA doctor, Dad was able to convince Dr. Issac to run another series of tests to check Dad’s need for dialysis. When reviewing the test results with Dad, Dr. Isaac said that Dad’s condition was borderline, and suggested that nephrology personnel closely follow Dad while he took diuretics. If the trial of diuretics worked, Dr. Issac would remove Dad from dialysis.

tappingBar

For all intents and purposes, Dad had approximately three liters of fluid removed each week, which would still need to be removed. With my parents’ blessing, Dr. Issac called me to ensure that I understood his plan so that I would be knowledgeable enough to discuss the process with my parents. In short, the doctor wanted Dad to go to the dialysis center once a week for blood work, weigh-in, and blood pressure check to see how well the diuretics handled Dad’s excess fluid. Dr. Issac prescribed that Dad take three tablets daily. I don’t know what Dad expected, but the diuretic had an immediate effect. Dad said that there was no way that he would take three pills a day. As a matter of fact, he said that he might take only one pill a week.

tappingCross1Dad went to the dialysis center on December 11 for his first weekly checkup, and according to my parents, the results were fine. When the nurse tried to schedule another appointment for December 20, Dad said that he would not see any doctors during the Christmas holiday. I was disappointed because I had wanted to accompany him (and the doctor wanted me to accompany Dad) on this appointment. While I was visiting my parents during the Christmas holiday, someone from the Scott & White dialysis center called the house and scheduled a follow-up appointment for Dad on January 26, 2018. I was concerned about the significant interval between visits and the lack of supervision during this test, especially now that Dad was taking the diuretics on a haphazard basis.

On January 21, 2018, I emailed Dr. Issac and updated him on what my father had and had not been doing. I asked if he could revisit Dad’s prescription during Dad’s January 26 appointment so that Dad might be more inclined to take the pills. I wasn’t expecting a response from Dr. Issac, so I didn’t log on to Dad’s MyChart account to see if the doctor had replied.

tappingCross2Unfortunately, the doctor did reply to my email the next day stating that Dad did not have any appointments scheduled with physicians at Scott & White, and then he asked me who Dad was seeing. My parents learned about the non-existent appointment when they showed up at the dialysis center on January 26. They were so mad that they vowed never to return to the dialysis center or see Dr. Issac. I was also very upset, but for different reasons. Not only did I respect and like Dr. Issac, but it had also now been more than a month since Dad had started self-medicating without the knowledge of a physician. Worse still, the more that I encouraged him to take the pills, the more that he dug in his heels to do as he pleased. The more that he resisted taking the prescribed drugs, the more I worried that he was dancing too close to the edge.

Showing off the miracle patient

nutsDecember 21, 2016. Dad had continued to progress well. Not only was he eating more, but he was also eating foods that I had assumed would be off limits for a patient who had been deemed a chronic aspirator. I recall a day in August 2015 when a pulmonologist fellow warned Mom and me that Dad would probably never be able to eat carrots and peas again, but we shouldn’t stop him from eating what he wanted, even if it killed him. And this guy was one of my favorite doctors. Not only was Dad now eating peas and carrots, he was also eating nuts and rice.

I contacted Adan Torres, who had been one of Dad’s speech therapists during his hospitalization and who had become a manager with Scott & White Home Care and Hospice, to ensure that he would be in his office today and able to take visitors. During our telephone conversation, I asked him if he knew who the attending physician at the CCH was this week. Happily, our favorite doctor and lifesaver, Dr. Randall Smith, was there. I had to admit that there were other doctors who I would have liked to see, if only to show them how wrong they had been about Dad. Fortunately, the universe was directing me to take the high road.

Dad and I arrived at Adan’s office shortly before 10:00 A.M. and spent more than 45 minutes visiting with Adan in his office. Dad didn’t have much memory of Adan, but he held a special place in the hearts of Mom and me. Adan marveled at Dad’s progress. A few weeks earlier, my parents had donated their unused medical supplies. Adan mentioned that when Dad had backed up his SUV and started unloading the donations, he called one of his associates to share the news of this once unlikely sight.

22339_106748422671218_6102789_nAs the time approached 11:00 A.M., I wanted to get Dad across the parking lot to the CCH before Dr. Smith left the building for lunch. Before we left, I gave Adan some of my homemade biscotti to share with his wife and some cookies for his kids.

When Dad and I left Adan’s office, we drove across the parking lot to the CCH. As we walked into the building, the receptionist recognized Dad and me and remarked on how much better Dad looked than the last time that she saw him. She wasn’t just whistling Dixie: when we left the CCH on September 29, 2015, most of the personnel at the CCH didn’t hold out much hope for Dad’s recovery. When I told her that we wanted to see Dr. Smith, she mentioned that we might have missed him because she didn’t see his pickup truck in the parking lot.

showingCross2While we waited to see if the doctor was still in the building, I asked the receptionist if we could see Marty, who was the case manager at the CCH. I had had somewhat of a rocky relationship with Marty during Dad’s two stays at the CCH. She had been very negative during about Dad’s prognosis and had not always treated my mother well, but in the end, she had pulled off a case-manager miracle during his discharge from the CCH. During our short visit in the CCH lobby, Marty told us that Dr. Smith was on a conference call that should be ending soon. Before she left us, I gave her some cookies for her daughters.

We had a fabulous 30-minute visit with the good doctor. He was thrilled with Dad’s progress and said that he looked great for an 88-year old, let alone someone who had been through a medical ordeal like Dad’s. He told us that seeing Dad inspired him and that he seldom had the opportunity to see patients after they left the CCH. Once again, Dad had no memory of this medical provider, but Dr. Smith had been the difference between life and death for Dad, and I will be forever grateful that God placed him at the right place at the right time.

39974D12-DAA7-4AF4-AC3F-E394A6C19FC8December 23. My parents have a large vegetable garden on their acre lot. Dad had decided that he wanted to change the footprint of the garden, which was designated by cinder blocks and bricks. Stan and I didn’t want my parents to move the cinder blocks themselves, so we volunteered to help Dad with the garden, and today’s weather was perfect for the task.

Dad, Stan, and I created an assembly line in which Stan would place the blocks on the handcart, Dad would bring the cart to me, and I would reposition the blocks in their new location. In the period of an afternoon, we had changed the footprint of the garden. One side of the garden remained open because Dad needed to move large sections of dirt before placing the final bricks.

Two days later, on Christmas day, Stan presented Dad with a gift certificate to rent a Bobcat to finish the dirt-moving task.

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February 25, 2017. The day that Dad would rent the Bobcat had finally arrived! Stan accompanied Dad to the rental company to pick up a Bobcat mini track loader. After successfully backing up the trailer and unloading the Bobcat, my two guys couldn’t figure out how to raise and lower the bucket. Fortunately, I understood how to read the documentation printed on the loader and was able to help them get started.

After a couple of hours of moving dirt and relocating the cinder blocks, the garden was well on its way to being ready for the spring planting. After missing the entire growing and harvesting season last year, Dad was ready to partake of another fruitful harvest.

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Thanking those who helped the caregivers

August 2016. Throughout Dad’s ordeal, Mom and I were on the receiving end of numerous acts of kindness. We spent many long days in a hospital room, dealing with negative doctors, hopeless diagnoses, and less-than-positive test results. As we walked into the house after one of those dark days, we often didn’t know what we’d eat for dinner. And then, quite often, the doorbell would ring, and one of our neighbors would be on our doorstep with something that she picked up from Austin or an extra casserole that she made while making one for her family.

thanksInvitationAs our friends showered us with kindness, Mom and I would ask ourselves how we’d ever be able to thank our friends. After almost a year of nonstop kindnesses, Dad was stable and was well on his way to leading his pre-hospitalization normal life. During one of our discussions about our friends, Mom and I decided to host a dinner and invite everyone who had lifted us up by their deeds and prayers. We contacted the Hilton Gardens and Inn and met with one of their banquet representatives. We selected September 30, 2016, as the date and Giving Thanks Day Dinner as the theme. Although I had good reason to be very thankful for a couple of our healthcare providers, we decided to exclude Scott & White employees and invite only friends. Unfortunately, four of the 14 people that we invited would be unable to attend.

September 29. Stan and I took a vacation day from work and drove to my parents’ home in Temple. When we arrived at my parents’ home, Mom told me that American HomePatient would be stopping by later today to pick up Dad’s wheelchair, which was fabulous news. Mom and I had been nagging Dad to get rid of this crutch for months. For a few months now, Dad had been using his cane or walker whenever he left the house. Without the wheelchair, he would now use these aids when he was in the house. Halleluiah.

September 30. Dad was very interested in our plans for the evening. Mom and I needed to arrive early to ensure that the room was ready and to apply some finishing touches. Dad wanted to ensure that he arrived last, so he and Stan decided that they would leave at 6:30 P.M., which was the start time on the invitation.

sunflowerWhen Mom and I arrived at the hotel, the room looked great. While Dad was hospitalized, I had kept real or artificial sunflowers in his room, and today the tables were decorated with sunflower arrangements. I had originally planned to let each one of our guests pick up a place card and choose an available seat. However, to ensure that everyone would be seated next to at least one acquaintance, I arranged the place cards, which also included the menu choices. Without realizing it, the placement of the place cards matched the order that I had planned to address our guests during my following remarks:

Last year, my father entered the hospital on May 6 for some elective heart surgery. He didn’t want any fuss, and he definitely didn’t want any visitors, including me, during his short stay. A few close friends knew about his scheduled surgery, but he didn’t want to announce it to the world, and certainly not from the pulpit. I figured that there would be Hell to pay when he learned that I had contacted the church during his surgery.

  • Jim and Sharon: Until May 15, when I called my mother to check on my father’s status, we thought that everything was progressing reasonably well. During that call with my mother, and the five that quickly followed, I could not understand what she was saying. When I finally realized that she was in desperate straits, I tried to call 911. It was then that I learned that you can’t call Bell County 911 from Harris County. After calls to the Bell County sheriff’s office and the hospital proved fruitless, Jim came to the rescue and called 911 for me. That phone call to 911 was the first of many kindnesses shown to us by Jim and Sharon. Every time that one of them called or stopped by with dinner or desserts, or mowed the lawn, or other numerous things, Mom and I said that we didn’t know how we’d ever be able to thank them.
  • thanksCross1Jane and Mickey: In my 60-some-odd years on this planet, I never realized the importance of giving food during hard times. However, this was the first time in my life, and probably my mother’s life, that I was losing weight without trying or without being sick. Sometimes we came home from the hospital so emotionally exhausted that the thought of preparing a meal was more than we could fathom. Jane’s yummy salads from Austin and homemade goodies were like manna from heaven, and Mom and I kept saying that we didn’t know how we’d ever be able to thank her.
  • Marilyn and Earl: For a few years, my parents attended the First United Methodist Church in Belton. On their first day there, a wonderful woman introduced herself and asked if my mother liked book clubs. This chance meeting has grown into a warm and beautiful friendship. I can’t remember when I called or texted Marilyn about Mom’s stroke, but I do remember her being at the hospital to see Mom. My mother probably doesn’t remember that first visit, but I do, not to mention the many other kindnesses. Following her stroke, Mom couldn’t be alone for a month. I had to return to Houston for a couple of days and Stan said that he would stay with her, but there would be an interval when she would be alone. All I had to do was call Marilyn. On the day that I had to leave, she stopped by the house at 8:00 A.M. and stayed with Mom until Stan arrived.thanksCross2Marilyn and Earl stopped by the hospital a few times to visit with Dad, but July 22nd would be the day that Mom and I will never forget. Mom was definitely a friend in need, and Marilyn was indeed the true friend. She sat with Mom for a few hours following his unfortunate event that morning.And Mom and I kept saying that we didn’t know how we could ever thank her.
  • Pastor Don and Wynn: I’m not from around here, and although I often attended the First United Methodist Church in Temple when I was in town, I didn’t know how to request pastoral care. I wasn’t even familiar with the term. I had contacted Pastor Tom for some unrelated reason about six months earlier, so I had his email address in my phone. Because Tom was sick or out of town, or something, it took a few days for Pastor Don to learn about my father’s hospitalization. But I believe that it wasn’t until my mother was hospitalized for her stroke that Don came to the hospital. I think that I emailed him on the day after she was admitted. Neither of my parents has any recollection of these visits during mid-May, but I do. As Mom healed and Dad recovered, we all came to depend on Don for his faith, kindness, and prayers, especially on the terrible few days following July 22nd of last year. We know that we sometimes asked a lot of him. Not only did Don have his regular pastoral duties, but he was also attending school in Austin.thanksCross3In addition to the fondness that we developed for Don, we also came to love his wife, Wynn, who Mom met on July 22 and I met a couple of days later. Wynn worked at Memorial Hospital in the chaplain’s office, and we became accustomed to her visits to Dad’s room. There were several reasons that we hated to leave Memorial again for the CCH, and not being able to see Wynn was one of them.We lost count of the times that Don visited Memorial and the CCH. He is so special and important to us, and Mom and I kept saying that we didn’t know how we’d ever be able to thank him.
  • Kris and Joan: When my parents first started attending the First United Methodist Church Temple, they had the good sense to sit in the pew in front of Kris, Joan, and Sue.thanksCross4During Dad’s first stint at Memorial, he was the church’s Member of the Week, and he received many cards from the church members, but I’m pretty sure that Kris sent more cards than all the other members combined.  And each card contained special messages of hope, faith, encouragement, and love. Joan, who is a retired nurse, also helped guide us through some of our darker days, providing support, advice, and comfort to Mom and me.And we kept saying that we didn’t know how we’d ever be able to thank them.
  • Sue: And then there was Sue. I hardly know where to begin, but I don’t know what would have happened to us without some timely intervention on her part on that terrible day last year, just two days before Thanksgiving. Dad had been sick, and I think that he became dehydrated during dialysis, which caused him to act like he was experiencing a side-effect to a new drug. It was a holiday week, so the doctor’s nurse told us to take him to the ER. We had him transported to the ER, where they rehydrated him. Unfortunately, they decided that we shouldn’t take him home. To make a long story short, I signed an AMA; they sicced the sheriff on us and turned me in to Adult Protective Services. My father was then discharged from Home Care, which had not only medical implications but also financial consequences.After a few tough moments and feeling like I was drowning in peanut butter, I called Sue and woke her up. Needless to say, because of Sue, we were quickly re-admitted, and then she vouched for us to the APS agent. I could go on, but I’d only embarrass her.You can’t imagine how many times Mom and I said that we didn’t know how we’d ever be able to thank her.
  • Stan: You might think that I’ve thanked everyone, but I’m not quite finished. Sometimes it’s easy to overlook those who are closest to us, but not every woman is lucky enough to have a husband who tells her to “go and take care of your family and don’t worry about me, the house, and the cats.” And that would have been enough, but he then drove to Temple on most weekends to relieve my mother and me so that we could attend church, and then he mowed the lawn and did some other odd jobs around the house.homeHospitalBedAnd when my father came home, Stan transformed my parents’ bedroom into a functional hospital room. And every night when I called him, he’d listened to me cry, complain, and rant. I know that we had vowed to be there for better or worse, but he really raised the bar. And his mother-in-law and I don’t know how we’ll ever be able to thank him.
  • In closing: We also had selfless assistance from a couple of other friends and neighbors. In addition, my best friend postponed a trip so that she could help me out for the week following my mother’s stroke, and my cousin stayed with us for a week last June. Sometimes I can’t believe how we lucked into such wonderful friends and family. My mother and I also don’t know how we’ll be able to adequately thank them.
  • It would be easy to look back on the last year and say that it was the worst year of our lives, and it probably was. At one point, I was relieved when Pastor Don told me that I could be mad at God, because I couldn’t believe that all this had happened to us. I thought that we were good people. But in hindsight, I’ve come to realize that sometimes bad stuff just happens. In our case, it was the luckiest year because at every bad turn, God blessed us with carefully placed angels like the people in this room. And I don’t know how I can thank Him enough.thanksSentiment3Yesterday was an anniversary of sorts for us. One year ago yesterday, my father was discharged from the CCH into Home Care. Six days from now, the man who doctors said would not live to see his 87th birthday will turn 88.

    Can I get an Amen?” (And I did!)

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Pastor Don, Dad, and Stan

The evening was perfect. The food was exceptionally good, and I didn’t cry. After everyone had left, Stan and I stayed for a few minutes and enjoyed a quiet moment and a cup of coffee. As we were preparing to leave, our 19-year old server approached me and told me how much she had liked what I had said, which was the icing on my perfect cake of a day.

Sunflower photo by Marco Secchi on Unsplash

 

 

Birthdays, emergency room miracles, and healthcare milestones

June 18, 2016. Stan and I were in Temple to celebrate my birthday, which had been on June 9 and Father’s Day, which was this Sunday. This weekend marked the return to our tradition of celebrating Father’s Day and my birthday at the same time. On my last birthday, Dad had been unable to swallow, let alone eat cake. His condition had remained unchanged for Stan’s birthday in July, Mom’s birthday in August, and his birthday in October. During that time, I had become resolute that when Dad could eat cake again, I would bake a cake that represented all of the missed birthdays. I envisioned a cake of four layers: a layer for each of us.

I’m partial to rum cake, Mom likes carrot cake, Dad likes chocolate, and Stan likes apple pie, so he would have to be happy with a reasonable cake alternative. To help expedite the process, I purchased four boxes of cake mix and pulled out the cake pans.

IMG_1878The finished cake sported numeral-shaped candles, each candle representing the second digit of our ages: 1, 2, 8, and 9. I had not considered the weights of the layers, and when I was finished, the cake resembled something that you might see in a Dr. Seuss book. I also hadn’t anticipated how much extra cake we’d have. Needless to say, we would not run out of dessert for quite some time. We all were able to enjoy our favorite day, and I was thankful that all four of us could eat cake.

July 1. Today was a big day for Dad. Dr. Jaffers had decided that the fistula was sufficiently cured and could now be used for hemodialysis. After more than 13 months of receiving dialysis via a tunneled hemodialysis catheter, today the catheter would be removed. He had had this catheter since September 29, 2016, just over nine months.

birthdayCross1Like many of the other procedures that Dad had had, this one would be simple and would be performed in the interventional radiology (IR) department by Dr. Dollar, the same interventional radiologist who placed the catheter in September.

The three of us arrived at the Interventional Radiology department at 12:30 P.M., and Dad was wheeled away in a gurney approximately 20 minutes later.

The nurse brought him back to the recovery area at 1:40 P.M. It seemed that the procedure had not been as simple as anticipated. Because the catheter had been in place for nine months, his body had sort of glommed on to it. As we left, the nurse told us that Dad would need to wear his dressing until Sunday afternoon, two days from now. If he showered before that time, he would need to protect the dressing with a shower shield. Once the dressing was removed, he could shower like a regular person. This news had been a long time coming and was like music to our ears, especially Dad’s.

IMG_1947After dinner, I asked Dad if he or Mom had checked his dressing since he had come home. Mom said that she hadn’t checked it, so we asked Dad to unbutton his shirt for us. The dressing was very bloody, and even Dad was concerned about the pool of blood that had collected. It was now after 7:00 P.M. on a Friday and holiday weekend. This was the second time that we had scheduled a simple procedure on a holiday weekend, which made me question our sanity.

We located the papers that the nurse gave Dad when he was discharged. I called the after-hours phone number and asked to speak with the on-call IR resident. After being connected to Dr. Jeffrey Rhea, he asked me a series of questions to help him decide our best course of action. I asked him if I could text him a photo of the dressing area. He liked that idea and at 7:30 P.M., I sent him the first photo. He called me and asked for another photo that included more of the clavicle area, which was the region of his primary concern.

birthdayCross4After reviewing both photos, he said that he didn’t see anything emergent and suggested that we stop by the IR clinic on Saturday after dialysis. As much as Dad hates the Scott & White emergency department, he, Mom, and I decided that he should get rid of the oversaturated dressing before tomorrow afternoon. I texted the doctor and told him that we were going to the emergency room. While en route to the hospital, he texted me as asked for our ETA. When we stopped at a signal, I responded that we were less than five minutes from the hospital.

At the hospital, I was thankful for Dad’s accessible parking placard because, except for the accessible parking spots, the parking lot was full. With me nervously holding on to the back of Dad’s shirt, he walked into the hospital on his own. As I had expected, the waiting room was packed. In the intake line, one person was ahead of us and speaking with the clerk. Off to the side, I noticed a woman telling a hospital employee that her daughter had arrived earlier in an ambulance and was in triage. She was late getting inside because it took her several minutes to find a parking space. When the person in front of us left, I held Dad back and told him that we would let the concerned mother go ahead of us. The slight delay would serve us well.

birthdayCross4When it was Dad’s turn, he explained to the clerk why he was there. When she finished questioning him and completing her paperwork, she told Dad to raise his arm so that she could fasten his ID tag around his wrist. At that moment, Dr. Rhea seemed to appear out of thin air, grabbed the ID bracelet, and said that he’d take care of us. He then told me and Dad, who was now in a wheelchair, to follow him to the end of the waiting room. We waited there while he gathered supplies from a couple of cabinets. As he was about to remove Dad’s dressing in the middle of the hallway, I reminded him that we were sitting in the middle of the main thoroughfare between the waiting room and the examination rooms. He acknowledged that the location might be problematic and had us move out of the waiting room, although we were still in a hallway. One of the ER nurses gave us a questioning look when she saw my father and all the blood from his dressing. I laughed and said, “Is this the OR?” She replied, “No, this is the ER.” Dr. Rhea quickly explained that he was just changing a dressing and would be out of the way in a few minutes.

When Dr. Rhea was finished, he wheeled Dad back to the waiting area and toward the entrance of the hospital. As we wheeled Dad to the parking lot, we thanked the resident doctor profusely. I’m fairly certain that our resident violated hospital protocol, but we appreciated his “git ‘er done” attitude. This trip to the hospital was truly an emergency room miracle: we completed the trip from home, to the hospital, and home again in less than an hour. When we got home, Dad was wide awake and was in the mood for a long game of Oh Hell, which he won. After a day like today, he deserved to win.

birthdayCross3For all intents and purposes, this surgery marked the official end to Dad’s health care odyssey—a mere 420 days after he entered the hospital for elective heart surgery. He would still need to gain some weight and strength, but he was now driving, attending church, and getting around my parents’ acre lot with little to no assistance from his cane, and he used his walker only when he went to dialysis. He had beaten the incredible odds against him and was a walking miracle.

As we looked back on the events of the past year, we acknowledged that there were a lot of couldas, wouldas, and shouldas, but we can’t change the past. We’d have to chalk up our experiences as lessons learned that we could share with others. As I had learned from my own experience with the hospital, it was easy to get sucked into the medical system and lose control of the situation and maybe even lose money. Having advocates and second opinions are vital for negotiating the healthcare industry.

 

The patients are doing better, but now the caregiver is down

June 1, 2016.  The headache that I woke up with yesterday had not subsided and woke me up at 12:51 A.M. I took more of Dad’s Extra Strength Tylenol and then vomited about 30 minutes later. The pain made it impossible to sleep and made me less than productive when I started working at 4:00 A.M. I attended one of my meetings but had to cancel the remainder of my meetings. At 7:00 A.M., I went back to bed.

fastCross1My husband suffers from migraines, but I very seldom get headaches, so Mom was very concerned. She called her doctor’s office to see if I could see the doctor today, but they didn’t have any openings. We didn’t want to go to the emergency department, so his nurse suggested that Mom take me to an urgent care center. The one closest to the house opened at 9:00 A.M., and we were waiting in the car when they unlocked the doors.

After a short wait, Mom accompanied me to the examination room. After the doctor asked me a few questions and had me walk across the room, he told me that he suspected that I was having a stroke. After the events of the past year, this diagnosis seemed like a bad dream, and I hated that my mother had to hear it. The doctor said that the only way to conclusively diagnose a stroke would be to go to Scott & White, the very place that I had been trying to avoid. Before I left, the doctor handed me a couple of prescriptions for back pain and the headache. Because I was headed for the hospital, I didn’t want to take the prescriptions, but after the doctor all but insisted that I take them, I put them in my purse. After having spent $125 at the urgent care center, we drove a couple of miles to the Scott & White Emergency Department (ED). Dad had a doctor’s appointment this morning, so I told Mom to drop me off at the door and then go home and take care of Dad. If I had learned nothing else this past year, it was that once you walk through the door of the emergency department, you’re there for a few hours.

ouchCross4Unbelievably, the waiting room was empty. Two nurses triaged me and took me right to an examination room. Although this might seem like standard operating procedure (SOP), in my experience with this ED, triage was followed by a lengthy wait in the waiting room. Business must be slow on Wednesday mornings. What was SOP was the blood draw and urinalysis, followed by an hour wait for the test results. While I was waiting, my mother was escorted to the examination room. She and Dad had decided to reschedule his appointment so that she could be with me.

During our wait, the primary ED physician stopped by to tell me that I was in good hands because the ED resident was a neurologist. To my horror, the resident then told me that she was going to order a spinal tap. At that point, I told her that when I had been at the urgent care center, the doctor suspected that I was having a stroke. She was confused by that diagnosis and asked me if I knew how he reached that diagnosis. I told her that I wasn’t sure, but he had been concerned that my walk had been a little disjointed and unsteady. After watching me walk, she was a little skeptical, but she ordered a chest x-ray and a CT scan of my head. After another wait, she ordered a CT scan of my lungs and an x-ray of my head. I could practically hear the bill growing.

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May is Stroke Awareness Month. If I had had my wits about me, I would have challenged the diagnosis of the urgent-care doctor. I had no facial drooping or difficulty with speech, and he didn’t check the strength of my arms. Mom had had a stroke on May 15, 2015, so I should have known better.

fastDollarsAnd then the woman with the traveling laptop entered the room to resolve my bill. After handing her my insurance card, she told me that I had a very good insurance plan for emergency care. My bill had come to $6,000.00 (approximately $1,000/hour), but my out-of-pocket portion was only $2,000.00 (gag). She started to say that if I were to be admitted, there would be some other process, but stopped midsentence and said that I would be admitted. When I asked why, she said that the doctor would return soon and she would tell me. After all of these tests and the pending admittance to the hospital, I wondered what the heck was wrong with me. When the doctor returned, she said that she was admitting me because I had pneumonia. I had spent a lot of time with someone who had had pneumonia twice during the past year, and I was pretty certain that I didn’t have a single symptom that would warrant that diagnosis.

Although I had dodged the spinal tap by bringing up the urgent care diagnosis, I cringed when she said that they needed to draw more blood for a blood culture—one draw from each arm, and they could not use the IV as a source. The worst thing that I inherited from Dad was his veins: we’re both terrible sticks. I told the nurse that she would have a difficult time getting more blood from me. After poohpoohing me, she tried unsuccessfully to hit a vein in my right arm. She was about to try again when the resident returned, saying that they were not going to admit me. It seemed that I didn’t have pneumonia after all. She said that what they had thought was fluid in my lungs was my diaphragm. They realized their mistake when someone checked the CT scan of my chest.

fastCocktailThe good news was that they were going to give me a nice IV cocktail of concoctions that would make my headache go away. Although I was grateful to get rid of the pain, I was not convinced that it wouldn’t return after all of the good drugs wore off. When I asked her if she had any idea what caused the pain, all she said that she doubted my assertion that I didn’t get headaches, which was hugely annoying.

After an hour, the liter of fluid and the good stuff that it contained had drained into my veins.  I felt better and Mom took me home. Unfortunately, the good feeling wore off in about four hours.

I was the designated driver for our family-reunion trip to Midland on Friday, but Mom was now having second thoughts about the five-hour drive, and she suggested that we cancel our trip. I reluctantly canceled our hotel reservation and contacted one of my cousins to apprise her of our situation.

fastCross2June 2. Fortunately, I had the prescriptions from the urgent care center, which we filled after breakfast. Because my pain had started in my head and extended down my back, the urgent care doctor had prescribed one medication to address the backache and another for the headache.

The prescribed pills seemed to do the trick, but they left me feeling stupid and sleepy, which made working almost impossible. I spent most of the day napping.

2014_ 09cats_014
Peanut

June 3. Peanut, our female cat, had been ill and Stan had dropped her off at the vet’s office for some tests. I called the vet this morning to get the results. Unfortunately, the news was not good. Peanut’s WBC count was elevated 10x above normal for cats. He said that he was pretty certain that she had bone marrow cancer, and she might also have cancer in her liver. He said that he’d call me Sunday morning before church with another update. During all the terrible times during Dad’s hospitalization, I had cried only once, and then it was for another patient. Maybe it was because of how I was feeling, but this news about our sweet cat was the tipping point for me, and I could not suppress my tears.

fastCross2I quit taking the medication for my back, but I dipped into the headache meds as often as I could. I don’t know what prompted me to do it, but I pulled out Mom’s yoga mat and ran through some Pilates moves that have helped me in the past with back pain.  Before the day was over, I had run through the routine two more times.

Because I had originally planned to be in Midland today, Stan had arrived last night so that he could spend the weekend with Dad. Although our family reunion plans were canceled for Mom and me, I was glad that Stan was here for me.

June 4. Stan relieved Mom today and took Dad to dialysis. He also picked him up at the end of his session, and the two guys ran some errands and retrieved Dad’s lawn mower from the repair shop.

annivCross1While Stan and Dad spent the day on outdoor activities, I kept running through my Pilates routines and noticed that my headache and back pain had diminished significantly.

June 5. Note to self: the next time that I get a screaming headache and backache, try Pilates before seeking medical assistance. I had had some back problems in the past, but they had never started with a headache. Exercise and stretching were now my first option. When Mom and I went to church this morning, both my back and head were pain-free.

Now Mom, Dad, and I had all experienced the Scott & White Emergency Department. When I went to see my doctor in Houston a week later (as advised by the ED resident), she shook her head, rolled her eyes, and asked: “what kind of medicine are they practicing up there?” I had had the same thought.