home care – Tale of Two Parents

Tap dancing along the slippery slope to recovery

Published on June 19, 2018June 18, 2018 by mellowdee551 Comment

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.

Because 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.

Several 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.

Because 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.

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.

Dad 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.

Unfortunately, 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

Published on June 12, 2018 by mellowdee55Leave a comment

December 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.

As 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.

While 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.

December 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.

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.

Thanking those who helped the caregivers

Published on June 5, 2018June 6, 2018 by mellowdee55Leave a comment

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.

As 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.

When 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.
Jane 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.Marilyn 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 22^nd 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.In 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.During 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.And 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.Yesterday 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 87^th birthday will turn 88.
Can I get an Amen?” (And I did!)

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

Published on May 29, 2018May 29, 2018 by mellowdee55Leave a comment

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.

The 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.

Like 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.

After 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.

After 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.

When 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.

For 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.

Transitioning from home-care patient to normalcy

Published on May 15, 2018May 17, 2018 by mellowdee552 Comments

May 15, 2016. Because Dad had told me that he wanted more access to his computer, I rearranged his computer station so that he could use his computer when I was at my home in Houston. Shortly before he was admitted to the hospital last May, he had purchased a new computer, which ran the Windows 8 operating system. Like most long-time Windows users, he had bonded with the Windows XP operating system and wasn’t enamored with the new operating system. During my return trip to my parents’ home, Dad complained that he could not remember how to use his new computer.

Before Dad’s extensive hospitalization, my parents worked Sudoku and crossword puzzles every evening after dinner. In addition to the hospitalization stay, having the home-care aides and me in the house had disrupted their daily routine. When I asked them if they’d like to resume their former evening activities, both of my parents said that they could not remember how to play Sudoku. I suggested that they start with crossword puzzles and that Stan might be able to get them started on Sudoku during his next visit.

Dad started saying that growing older was terrible. I wished that I could convince him that he was doing well, in spite of his setbacks.

May 17. Per Dad’s request, I was spending less time at my parents’ house. They seemed to be doing pretty well, so I felt more comfortable about limiting my time with them to long weekends, versus the week- or month-long stays. Truth be told, I was probably as eager to resume my normal life as they were to resume theirs.

Following the discussion with my parents about Dad taking pectin instead of a statin to control his cholesterol, I contacted Dr. Elizabeth Ebert, my parents’ cardiologist. According to Jennifer, Dr. Ebert’s nurse, Dad had told the doctor that he wanted to stop taking statins, so she removed them from his list of medications. When I relayed this information to my parents, they said that they had no recollection of this conversation, but now it seemed that we didn’t need to explore the issue of replacing the statin with pectin. Although the nurses were often our best source of information (or alternative viewpoints), I would have preferred that my parents confer with their doctors before adopting the suggestions of a visiting nurse.

Rain had been forecast for the central Texas area, but we received only a slight mist during the morning. Shortly after Dad returned home from dialysis, I packed up my computer and started my return trip to the BMC office in Houston. I arrived at the office shortly before 3:30 P.M. and worked until 5:00 P.M. so that I could meet my former manager for dinner. With my crazy caregiver schedule, I had had only rare interactions with my friends during the past year, and it was nice to visit with a good friend.

May 18. I was in Houston for the remainder of the week and would return to Temple on Saturday. When I worked from the office in Houston, my commute home from work wasn’t terrible, but it wasn’t always predictable, and I missed seeing Stan by a couple of minutes. Once a month, he had to work an all-nighter, and he would not be home again until sometime after 3:30 A.M. tomorrow.

A dove had built a nest of sorts (Doves are inept at building nests.) on our front porch. Whenever I walked up the porch stairs, I would stop and check on the status of the (ugly) baby dove and its mother. Today when I got home, the mother dove was gone, and it looked like a dead baby bird was in the nest. I checked before going to bed, and the mother dove had returned. I assumed that I was wrong about the baby dove, but marvel at how still baby doves could lie. We had also had a dove nesting in a crepe myrtle tree in our backyard, but that nest now seemed to be empty. During the past couple of years, the porch had become a favorite nesting location for doves. Stan said that he didn’t like the messy doves nesting on the porch, but I enjoyed having this bird’s-eye view of spring.

Mom spent a couple of hours at the hospital today with her friend Marilyn, whose husband was battling bladder cancer. Marilyn had been Mom’s friend in need on numerous occasions during the past year, and Mom was glad to be able to return the favor, if only in a small way. Mom’s time at the hospital with Marilyn was one of the few times that Dad had been left alone since he had been at home. Leaving Dad alone might not have been a big step for Dad, but it seemed like a huge milestone for Mom (and me).

May 21. It rained over three inches in Temple this morning, but by noon the rain had stopped. The weather was a little dicey between Houston and Temple, and the drive took me a little longer than usual. Shortly after I arrived, Mom and Dad returned home from dialysis.

Although I had planned to limit my time in Temple to long weekends, the upcoming holiday weekend and family reunion scheduled for the next weekend caused me to extend this trip to two weeks. Unfortunately for Dad, I would be commandeering his computer workspace during this time. After my father had been unable to get up while adjusting the irrigation in my parents’ vegetable garden, Stan suggested that we get them a tractor scoot. It’s sort of like a cross between a wagon and a scooter. We knew that my parents wouldn’t buy it for themselves, so we purchased it for them as an early wedding anniversary gift. Some assembly was required, but they seemed to like it and might actually use it.

May 30. Today was the observed holiday for Memorial Day, so I had the day off from work. Instead of sleeping in, I was rudely awakened at 3:00 A.M. by a thunderstorm. With the memory of last year’s Memorial Day flood (and this year’s Tax Day flood) still fresh in our minds, we hoped that the storm would pass quickly and provide only a limited amount of moisture. Fortunately, the thunderstorm had not also been a gully washer. Mom and I had planned to weed the garden this morning, but we would postpone those plans until the afternoon.

Because Stan planned to take off from work next Friday and spend a long weekend with Dad while Mom and I attended a family reunion, he had stayed home this weekend. In addition to some chores that he had to attend to around our house, Peanut, our female cat, was experiencing some health problems that seemed serious, and she needed some attention.

Shortly before noon, Christine, the home care nurse, stopped by to discharge Dad from Scott & White Home Care. However, when she learned that Dad had not yet transitioned from the dialysis catheter to the fistula for dialysis, she decided to keep Dad in the program for another few weeks. We all agreed that although we didn’t anticipate any problems, Dad had a history of encountering unanticipated problems.

Although the ground was a little soupy, the conditions were perfect for pulling out weeds, and I was prepared with my knee-high rain boots. Mom and I weeded the vegetable garden for about an hour and were pleased with our results. The sky had remained overcast, so we weren’t sweltering from heat.

After I had a chance to de-mud myself, my parents and I prepared a Memorial Day dinner. Dad and I barbequed hotdogs on the grill and mom fixed baked beans. A few years earlier, Mom and Stan witnessed Dad and me accidentally dropping a hot dog on the ground and placing it back on the grill. No such event happened this year and it seemed that Dad and I were in finer grilling form than before his surgery.

After dining on baked beans and hot dogs, we played Oh Hell and Mom won.

transitionArrow2 — Today was also one of my parents’ wedding anniversary.

May 31. When I woke up at 3:30 A.M., I had a headache. I took some Advil with my coffee and logged on to work at 4:00 A.M. A few hours later, I stopped work for a couple of hours so that Mom and I could accompany Dad to his appointment with the endocrinologist. We had never met this doctor and Dad’s new primary care physician had scheduled the appointment. I didn’t know what an endocrinologist did, and I wasn’t sure why we were meeting with her. I liked this doctor, but it was apparent during the introductions that this visit would be challenging for my parents. The doctor was Indian, had a rapid speech pattern, and was soft spoken. Neither of my parents could understand her, so I interpreted everything that she said.

In short, she said that Dad had severe osteoporosis, which he most likely got from lying in bed for six months. During that time, calcium had leeched from his bones and into his blood, which was why his calcium numbers had been so high.

The doctor recommended that Dad take medication to strengthen his bones. Because of his renal failure, the only drug that he could take was Prolia, which is administered as an injection every six months. I told the doctor that I had known some women who sounded like they were dying after taking similar drugs. She told me that today was just a consultation and that we should go home, research the drug, and then make a decision. She said that if we had any questions, we could call her.

When we returned home from the doctor’s office, Dad told me that he was not going to take this drug. At first, Mom was concerned about his decision, but then we started googling for information about the drug’s side effects. Within 30 minutes, we all agreed that the adverse side effects could outweigh the benefits of taking this drug. I had mixed feelings about disagreeing with a doctor’s advice. Although it wouldn’t be the first time that we had gone against medical advice, I didn’t want us to default to that response.

Many of the doctors that we had encountered during Dad’s health-care event seemed happy to discuss his odds of living through the ordeal, but when it came to the drugs that they prescribed, they neglected to address benefits versus side effects, some of which had been severe. I know that thousands (maybe millions) of women take drugs to strengthen bones, but how long does it take for the drug to effect a change, and by what percentage? If you’re almost 90 years old, what benefit can you expect? If a doctor prescribes a drug to reduce fractures caused by falls, wouldn’t it be prudent to prescribe physical therapy that addresses building core muscles? I found it frustrating that the first option for doctors seemed to be the prescription pad.

Eagerly anticipating 7 days in a row without a medical incident

Published on May 1, 2018April 30, 2018 by mellowdee55Leave a comment

April 26, 2016. I was slow to get up this morning. I finally dragged myself out of bed at 4:05 A.M., but I wasn’t the only one who was slow to get started. At 5:05 A.M. I had to wake my parents. Even with the late start, Dad and Mom got off to dialysis on time, and Mom was home by 7:15 A.M., which meant that Dad was hooked up well before his 7:00 A.M. chair time. The workmen arrived shortly after 9:00 A.M. and started hanging plastic to isolate their work area and to confine their dust to a small area of the house. They worked most of the day replacing the broken tiles.

Now that Dad seemed to be recovering nicely, he didn’t need my constant presence, which enabled me to spend more time at my home in Houston. I left my parents’ home at 12:30 P.M. and arrived at my home in Houston around 3:15 P.M. I logged on and worked until Stan got home from work at 5:00 P.M., armed with some barbecued ribs, one of my favorite meals.

While Stan and I were eating, Mom called because she had not heard from me. I always call them after the three-hour drive, but today, my call was picked up by voicemail. Evidently, my parents had decided to get out of the plastic maze that their house had become, and they had been relaxing on the patio when I called and had not heard the phone ring.

My mother said that Mike’s contractors did an excellent job and that the tile looked as good as new.

April 27. A different set of tradesmen arrived at my parents’ house today. This group concentrated on repairing the cracked walls and spent quite a bit of time patching the cracks and doing other prep work necessary for painting. Dad had also contracted with the crew to paint the exterior of the house. It had stormed during the night, and these guys added to the wet house by power washing it.

While the house was being prepped for its beauty treatment, Mom drove Dad to his appointment with Dr. Elizabeth Ebert, his cardiologist. The doctor said that Dad’s heart and its new valve were fine and performing well. While they were in her office, she accessed Dad’s x-rays and confirmed that she also saw seven compression fractures in his spine. Mom didn’t say why the doctor accessed Dad’s x-rays, but I assumed that Dad had told her about his constant pain.

April 30. Even though Stan and I took the day off from work today, I still woke up at 4:30 A.M. I did some laundry, tidied up around the house, and went to the grocery store. By that time, it was raining (again). By 9:00 A.M., I had my car packed and was ready to drive to Temple. Stan left shortly after me.

When I arrived at my folks’ house at 11:30 AM., the front door was unlocked, and when I went inside, it seemed as if no one was at home. On my third trip into the house while unloading my car, my mother came out of the master bedroom and told me that Dad was taking a shower. Until the dialysis catheter was removed, preparing Dad for a shower was an ordeal that involved securely shielding the dialysis ports and ensuring that we didn’t disrupt them in the process. By 12:30 P.M., Dad was dressed, and Stan was pulling into the driveway. Mom told me that before he left dialysis yesterday, the nurse measured his height, and he was 5’10”, three inches shorter than his height when he entered the hospital less than 12 months ago. Also as disturbing was the news that his weight was down to 143 lbs. During the past year, Mom had also lost 20 lbs—weight that she didn’t need to lose. After years of watching their weight, we were not concerned about too much weight loss.

When preparing the house for the repair work, the contractors had us remove vases, knick-knacks, and any other objects that they might damage. After lunch, I helped Mom return everything to its rightful place—sort of. I couldn’t believe how difficult it was for us to remember where everything had been for five years. I questioned both my power of observation and my memory.

The weather was beautiful in Temple, and Stan and Dad took advantage of the nice day by spending the afternoon outside doing yard work. Meanwhile, inside the house, Mom was baking a cake and I was preparing ham loaf for dinner.

After dinner, we played cards, and Dad beat Mom by one point.

May 1. I compensated for my lack of sleep on Thursday night by getting nine hours of sleep last night. When I woke up at 6:45 A.M., I heard Mom in the kitchen. She had been up for almost an hour, and the coffee was ready.

Mom and I went to church, leaving the guys at home to play cards and perhaps do some chores. On the way out of the church, Pastor Tom hugged me and told me to say hello to my father. I told him that I’d been eager for Dad to get to the point where I could take him out to dinner. I then asked Tom if he could recommend any good sushi restaurants. He looked at me for a couple of moments and then said that I was still welcome to attend church. Mom hadn’t heard what I asked him, but the people behind us did, and they laughed. Tom loved beef and comfort food, but anyone who knew him also knew that he detested salad, vegetables, and sushi.

When we got home, Dad and Stan had taken a break from some outdoor chores and were playing cribbage, and Dad was winning. After lunch, Dad and Stan went back outdoors for more yard work until it was time for Stan to return to Houston. He left Temple at 4:30 P.M. and arrived at our home in Houston three hours later.

After dinner, we played Oh Hell, and I won.

May 3. I worked at my parents’ house until 11:15 A.M., and then started packing up for my return trip home. Dad had only 1,200 ml of fluid removed today. He still weighed 149 lbs, although he seemed to be eating as much as the rest of us.

I called Holly, the manager of American HomePatient to have them pick up everything except the wheelchair. Unfortunately, a lot of what they had sent us last September could not be used for other patients. We’d either need to sell or donate much of what we still had on hand.

As much grief as I gave Dad for not cooperating with his physical therapists, I had not completed my physical therapy sessions following my wrist surgery last year. I still had a couple of sessions left when Mom had a stroke last year, and I had not been able to see the therapist or surgeon. My wrist had been reminding me of these oversights for the past couple of days. Dad’s Extra Strength Tylenol seemed to help somewhat.

The leading news story of the day was that medical errors were the third leading cause of death in the USA for adults. The report went on to say that one in four people in the hospital would suffer from errors, and some of those errors would be fatal. After all that we had been through during the past year, this news story was not news to us, and not surprising. With all that Stan had witnessed with his parents’ final days, he also shared my sentiments.

Mom had been battling skin cancer during the past few years. Her younger years spent on California beaches and the Jersey shore, coupled with gardening and farming had finally caught up with her. During a trip to the dermatologist today, the doctor took a biopsy from her forehead. We were crossing our fingers that she didn’t require more surgery or radiation treatment.

I watch the election returns for the Indiana primary. I couldn’t understand what was happening. Trump was the big winner again, which surprised me, and Cruz dropped out of the race, which pleased and surprised me.

May 4. Mom woke up in the middle of the night, bleeding from the spot on her forehead where the doctor had taken the biopsy. She was able to stop the bleeding and did what she could to bandage it.

Kathleen stopped by today to assess Dad’s progress with his physical therapy. As she left, the homecare nurse arrived for Dad’s routine check-up. She said that Dad was fine, but she was concerned about Mom’s forehead. She told Mom that she must have the bleeding addressed today.

When Mom contacted the dermatologist, she was told to come to the office. While she was there, the wound was cauterized, which was very painful. The nurse also applied a tight compress to arrest the blood flow. By the time that I spoke with Mom on the phone, she told me that her forehead seemed to be doing fine.

I kept hoping for a couple of weeks in a row where nothing happened to either of my parents. I sometimes felt like we should have one of those signs like the ones posted in factories: 7 days without a medical incident. Today the counter was reset to zero.

A clerk from American HomePatient stopped by to pick up medical equipment, but he didn’t have the wheelchair IV pole on the list, so the IV pole remained at the house. Although we still had some medical supplies in the house, having the larger equipment removed, coupled with getting the repair work done, was a huge milestone a step toward their life as they had known it.

Life without the PEG

Published on April 24, 2018April 24, 2018 by mellowdee55Leave a comment

April 19, 2016. In the days following the removal of Dad’s PEG, a sense of normalcy seemed to descend on my parents’ home. Dad still had dialysis sessions on Tuesdays, Thursdays, and Saturdays, but we no longer had to deal with the PEG tube and the stoma, and Dad could get rid of his undershirts that we had customized to accommodate the tubing. Only the dialysis catheter still remained, and it would stay in place until the fistula was cured and ready for dialysis.

The amount of fluid that was removed from Dad during dialysis seemed to fluctuate widely. On one day, they would remove 2,200 ml, and two days later they would remove only 1,200 ml of fluid, which was the minimum level. It was hard to believe that fluid retention could vary by a liter. We tried to ensure that Dad adhered to his renal diet and couldn’t understand the fluctuations.

I traveled back to Houston for a few days and was astonished by the high water that I saw on the drive home. The Little River, which is often barely more than a trickle, looked like a boiling ocean and extended the entire width of the bridge. I had often wondered why the bridge over this pissant river was almost a mile long, and now I knew. The Brazos River was shockingly high as well. The news about the rain had made the national news, but this drive home gave me a first-hand glimpse of its aftermath. I had heard that a portion of US290 had been damaged during the flood, so I exited to FM99, only to be turned back because the road was underwater. Fortunately, the damage to US290 affected only one lane, so the slowdown was minimal. I suspected that I would start seeing some flooded neighborhoods as I approached Houston.

In 2004, my parents designed their current Temple home and contracted with Mike, the builder who had built their previous home, to turn their plans into reality. Several months before Dad entered the hospital in May 2015, the foundation cracked, causing cracks in the walls and the tile floors. A couple of weeks before Dad’s surgery, Mike repaired the foundation (at no cost to my parents). Mike had planned to let Dad contract his crew to repair the cracked drywall and tile when Dad returned from the hospital. Those plans were put on hold when Dad was discharged from the 148-day hospital stay to almost five months of home care. Not only would the work have been very disruptive, but Dad had a tracheostomy and could not be exposed to the fine dust from the tile work and drywall. Now, some 11 months later, the tradesmen had arrived and the final repair work was about to begin.

April 20. Today was my first day in the Houston office for the first time in a few weeks. On earlier trips to Houston, I had worked from my home office. It was nice to be back among my coworkers, some of whom I hadn’t seen in almost a year.

At 10:45 A.M., I received a text message from Sue, the dialysis nurse practitioner. I had contacted her earlier because Dad had been experiencing some irregularity, and I now never purchased any OTC medications without first asking her if they were safe for renal patients. In this instance, she told me that Dr. Issac, the nephrologist, recommended that Dad take Miralax. I passed along this message to Mom, and she said that she would have him start taking it.

Mom and Dad worked in the garden, and Dad decided to do some work on their irrigation system. After getting down on the ground, he couldn’t get up. Mom wasn’t strong enough to help him up, so she had him crawl over to the greenhouse steps, and from there he was able to sit and then stand up. I had no qualms about him getting on the ground to work in the garden, but it was important to have (stable) aids nearby that he could use to get back on his feet. Fortunately, their garden shed was next to the garden. He could also have crawled to the chairs on the patio, but he might have encountered some chiggers and fire ants on the way. Stan had seen a wagon in a gardening magazine that might be helpful to Dad, but we were fairly certain that Dad would not want us to order it.

Dad had a physical therapy session with Brenda today, but their session was cut short because of the pain in Dad’s back. Before she left, Brenda provided Dad with a list of exercises that she wanted him to perform before their next session. Dad wasn’t known for exercising between sessions, and I doubted whether he would do them.

April 21. It was another rainy day in Houston and Temple. We didn’t need the rain in Houston, and I didn’t like Mom driving Dad to dialysis in the rain. During dialysis, Dad had 1,200 ml of fluid removed.

When I spoke with Mom, she said that Dad had gotten up on the riding mower and spent about 15 minutes mowing the backyard. Many years earlier, Dad had had some terrible back problems, and a doctor (probably a surgeon) had recommended back surgery. Like me, my father had a career that required you to sit all day, which is terrible for your back. After my parents retired to a farm in Colorado, he spent a lot of time working outside and riding his tractor, and he swore that the tractor fixed his back. I assumed that he was looking to his riding mower for similar relief.

April 22. Stan and I had planned to spend the weekend in Temple but decided to go a day early instead of our usual Saturday. I worked for about seven hours, and he did some chores around the house before we left for Temple in two cars. Stan left around 1:45 P.M. and I followed him about 15 minutes later, but I arrived about 15 minutes before him. Although I might have a tiny bit of a heavy foot, he made two stops along the way to my one stop.

The weather was fabulous in Temple, so we enjoyed our happy hour drinks on the patio. Because today was Friday, we had tacos for dinner. Stan and I often teased my parents about their mealtime conventions. You could always tell what day it was by the breakfast and dinner menus. After dinner, we played Oh Hell, and I won, which broke my current losing streak.

April 23. Dad often complained about having to get up at 4:45 A.M. to get to dialysis, but he almost always woke up earlier, and this morning was no exception. According to my mother, he was awake and out of bed at 4:00 A.M. He went back to bed at 4:30 A.M. and she then had to wake him at 4:45 A.M.

Stan and I took my car to a local garage for an oil change, and then we drove to the nearby town of Buckholts for a short photo safari. During my many trips to and from Temple, I had passed an old abandoned house that I wanted to photograph, but I had never had the time to stop. The weather was still nice and we were able to spend some time away from the house. On our way back to my parents’ home, Stan stopped in Rogers and purchased some doughnuts. He said that the doughnuts were for Mom, but I think that he used her as an excuse to buy them for himself.

After lunch, Dad and I started preparing a stew for tonight’s dinner. He had purchased the vegetables, so the stew was chock full of vegetables that we didn’t see when Mom shopped. While the stew simmered, I had Dad take an hour nap. Mom and Stan were slaving in the backyard. Mom worked in her garden and the courtyard and Stan mowed the lawn, trimmed some bushes, and treated fire ant hills.

Both my parents made two disturbing statements today. Mom said that “it was a shame that my father had to end his life this way,” and Dad said that “it’s too bad that you have to have dialysis just to live.” I guess my perspective differed from my parents’. I was thrilled that he was here and that we were still able to have fun as a family. We’re the perfect example of viewing the glass as either half empty or half full.

April 24. I slept until I was awakened by the rising sun shining on my face. My room didn’t have curtains, but I rarely slept until sunrise. I finally got out of bed shortly before 7:00 A.M. and changed into my scrubs, which had become my new go-to early-morning clothes. Mom was downstairs, and I heard the familiar tone from the coffee maker that indicated that my coffee had finished brewing.

While Mom and I attended church, the guys were outside in the garden, spraying and doing a variety of miscellaneous yard maintenance chores. After lunch, the guys went back outside to do more spraying, and then they came inside to watch a golf tournament. Stan helped me put away some of the Christmas decorations that had been sitting on the floor in the storage room. Stan left shortly after 5:00 P.M. and arrived home around 8:00 P.M.

Mom, Dad, and I had drinks out on the patio, and Dad and I cooked hot dogs on the grill. For the first time in longer than I can recall, we watched TV after dinner instead of playing cards.

April 25. I had been working for about 45 minutes when I heard Dad’s wheelchair pass by the office en route to the kitchen. When I reminded him that he had four days a week that he could sleep in, he gave me a look of mock surprise. He liked to complain about having to wake up early for dialysis, but he also woke up early on his off days. I followed him into the kitchen to refill my coffee cup and heated him some water while I was there. A few minutes after finishing his coffee, I heard him return to the bedroom and get back into bed.

Mom woke up at 6:30 A.M. and stopped by the office to say good morning and tell me that Dad was still sleeping. He eventually woke up again around 7:00 A.M., which was when I went to the kitchen for breakfast.

I was glad that we didn’t have any planned meetings today with home-care health providers. Shortly after 9:00 A.M., Russell and his assistant arrived and started repairing broken tile. They worked until 3:00 P.M., which was when I also quit working for the day so that I could accompany Mom and Dad to the doctor’s office.

Dad’s PCP worked Tuesday through Friday, and not always from the Temple office, and it was difficult to see her within a reasonable amount of time. When I had asked our friend Sue if she could recommend another PCP for Dad, she had recommended Dr. Michael Martin. Dad met with him today for about 20 minutes. The doctor ordered some x-rays and bloodwork, and then we scheduled a follow-up appointment. On the drive home, we all agreed that we liked this doctor. In light of the decision to switch PCPs, Mom said that she would cancel Dad’s appointment with Sarla Patil on Wednesday, two days from now.

On the way home, we stopped by Walgreens to purchase birthday cards for a niece, nephew, and grandniece. Since becoming the last Locke of his generation in October of 2008, Dad had been keeping in touch with the children and grandchildren of his siblings. During his medical ordeal of the past year, Dad had maintained this correspondence, being unable to sign only one card, which Mom signed on his behalf.

Photo by Marcus Dall Col on Unsplash

Reaching another milestone: PEG removal!

Published on April 17, 2018 by mellowdee55Leave a comment

April 13, 2016. My alarm woke me, but it was only just a little after 2:00 A.M., and the alarm was in my dream. I was able to get back to sleep and woke up at 3:45 A.M. when the alarm actually went off. I think that I inherited these wake-up dreams from my father. He often wakes up early from naps, swearing that Mom woke him.

While I worked, Dad sat at his desk in my parents’ office and finished preparing their tax return. Shortly after breakfast, Brenda, the home care physical therapist, called to see if she and her supervisor, Kathleen, could stop by later in the morning to assess Dad’s progress.

I had to drive back to Houston this afternoon. I was already fighting to stay awake and decided to take a short nap during my lunch break, so I missed seeing the physical therapists when they arrived at 11:30 A.M. Dad was walking pretty well, but his recent back pain had affected his balance somewhat. Kathleen said that Brenda would focus more on his core muscles to help Dad with his balance.

Shortly after I woke up from my nap, the three of us left for Dad’s 2:20 P.M. appointment with the gastroenterologist. When we arrived, Dad weighed 151 pounds, his blood pressure was 112/69, and his temperature was 96 degrees. In the exam room, after Julie, the dietitian, asked about Dad’s protein and caloric intake, I was a little anxious when she said that Dad needed to consume an additional 20 grams of protein each day.

When Dr. Pfanner entered the exam room, he helped Dad up on the exam table and quickly removed the PEG tube. Dad didn’t feel anything, and Mom and I glanced away for a millisecond and missed seeing the “balloon” as the doctor removed it. For the better part of eight months, Dad had had a hole in his 87-year old stomach, and now I was concerned about how long it would take to heal and close. When I asked the doctor about how long Dad would have to abstain from eating and drinking, I was shocked when he said that Dad couldn’t eat anything for 4-6 hours, and then he should consume only Nepro until tomorrow. Today was the second time in four months that I had been amazed at the speed in which some of our body parts could heal. Dad’s trach stoma had healed in two days, and now his stomach would be ready to consume liquid in six hours. The epidermis doesn’t heal nearly as fast. I have had paper cuts that took three times as long to heal.

We had driven to the doctor’s office in two cars. After the appointment, I helped my parents into their car, drove to Starbucks for some coffee, and then started my drive to Houston at 3:19 P.M. The traffic was relatively light, but I was feeling drowsy when I reached Waller, approximately 40 miles from home. Fortunately, Waller had a Buc-ee’s, one of the best rest stops in Texas. I stopped to stretch my legs and buy another cup of coffee. As I walked toward the exit, I met a wall of teenagers. Five buses had just unloaded more than 100 kids. I thanked my lucky stars for my perfect timing.

I got home shortly before 6:30 P.M.

April 14. According to Mom, Dad didn’t experience any problems during dialysis today. Although his blood pressure was a little low, it was not low enough to require midodrine to elevate it. He still complained of back pain, but he didn’t feel any discomfort at the site of his PEG stoma.

I asked Mom if Dad had tried to find the thrill on his arm every morning as he had been instructed by his surgeon, and her response was not what I had hoped. She said that they often have trouble finding it and that it’s not as strong as they would have thought. I told her to ask the dialysis nurses about it and that it’s too important to ignore. She agreed that asking the dialysis nurse was a good idea and agreed to ask one of them on Saturday, two days from now.

When the home care nurse stopped by, she said that she thought that Dad might be suffering from adhesions. I can’t imagine how she came to that conclusion, and Mom never mentioned where these adhesions might be located or what the nurse suggested that we should do about them. On a positive note, Dad’s vitals were good. Evidently, this nurse had come by the house about three months ago and was impressed by Dad’s progress since then. Before she left, the nurse helped Dad and Mom find the thrill on Dad’s fistula.

April 15. Kristen, Dad’s swallow therapist, stopped by for her final session with Dad. Before she left, she said that Dad could start trying to swallow his pills. She encouraged him to start with very small pills and coat them in applesauce. Dad had been crushing the pills and mixing them with applesauce. Evidently, some of the pills tasted vile, so being able to swallow them would be a welcome change. Still, the thought of his swallowing pills made me nervous. I had been taking liquid vitamins for several years, and I suggested to Mom that we should ask Dr. Martin if Dad could swallow the pills with the liquid vitamins. When mixed with water, the liquid was a thickened liquid and quite slippery, which I thought might ease swallowing.

April 16. Dad had dialysis this morning. According to Mom, they removed about 1,500 ml of fluid. After a morning of running errands, I started my drive back to Temple, leaving my husband on the links with his golf buddy.

The highway from Houston to Temple passes through small towns, many of which get their revenue from speeding drivers. After my numerous trips to Temple, I knew when to slow down. Unfortunately, I wasn’t paying attention and resumed the 70 MPH speed a tad too early. I was stopped just outside of Somerville and got my second warning since Dad’s hospitalization last May. When the very nice officer handed me my driver’s license and warning, he advised me to watch my speed today. Because of several festivals in the area, there were many more patrol officers monitoring speeds than usual. As I eased back onto the highway, I noticed that I had stopped just a few yards shy of the posted 70 MPH sign. After setting my cruise control at 72 MPH, I arrived in Temple at 2:03 P.M.

With some assistance from Mom, Dad prepared a spaghetti dinner. Unfortunately, shortly after our nice dinner, Dad and I had another knock-down drag-out argument about his health and attitude about taking care of himself. Unlike so many other times, we eventually had a meeting of the minds and we agreed on a plan for managing his pain and boosting his protein intake.

April 17. Dad didn’t feel like going to church today, and the weather was dreary. The three of us enjoyed a nice breakfast of homemade cinnamon rolls, and then I worked on my computer until Mom and I left for church.

After the church service, we mentioned to our friend Sue, who was also the nurse practitioner at the dialysis center, that Dad was still experiencing a lot of pain. She said that she would order x-rays for him. I also asked her about medical alert bracelets for dialysis patients with fistulas. For the rest of his life, he can never have blood drawn or his blood pressure taken on his left arm. She said that she thought that we could get him such a medical bracelet.

After a yummy lunch of grilled cheese sandwiches, Mom and I went outside to cover up some cantaloupe seedlings. We were expecting stormy weather, and she wanted to protect the young seedlings so that they wouldn’t drown. After watching the depressing evening news and eating dinner, we played Oh Hell, and Mom beat Dad by three points.

April 18. Dad had a 10:00 A.M. post-op appointment with Dr. Jaffers, the surgeon who had built the fistula in Dad’s left arm. While waiting for the doctor, Dad vomited in the exam room. According to Mom, he had just taken his morning meds before we left the house. The last time that he vomited, he had just taken his meds on an empty stomach. Other than the vomiting in the exam room, the doctor thought that Dad was healing well and that his fistula should be cured and ready to use during hemodialysis by early June.

I thought that we also had an appointment for x-rays, but when we arrived in the radiology department, Dad was not on their schedule. I texted Sue because she had told me that she would enter an order for the x-rays. Evidently, she had encountered a problem with her computer, and then she became distracted and forgot to enter the orders. While we were in the radiology waiting room, the order appeared, and Dad was called by the technician after a short wait.

The x-ray process was painful for Dad. Although x-rays aren’t painful, getting up on the hard table, being repositioned on the table, and getting down from the table was painful. I hoped that these x-rays would show something useful and actionable.

During an afternoon meeting with my manager, I learned that she had accepted a position in another business unit. She had been a wonderful manager and very supportive while I’ve been working remotely from my parents’ house. The two of us had made a great team, and it felt like she was breaking up the band. Although I knew that this move would benefit her, I was a bit apprehensive about how it would affect me.

I stopped working at 5:00 P.M. for our happy hour. After a nice dinner of leftovers, we played Oh Hell, and I lost again.

Before going to sleep, I called my husband in Houston. Evidently, Houston had received between 9-15 inches of rain, depending on the area of town. According to the news, this was the worst rain event since tropical storm Allison in 2001 and has been dubbed the Tax Day Flood. Stan said that our house was OK. He didn’t know how much rain we received at our house. All he knew was that our 5.5” rain gauge had overflowed.

On the road to PEG removal

Published on April 10, 2018 by mellowdee55Leave a comment

April 8, 2016. When Dad’s PCP reviewed his CT scan on March 24, in addition to the seven stress fractures, she mentioned that he had an enlarged prostate, and she recommended that Dad see a urologist. About an hour before my parents were to leave home for the appointment with the urologist, Dad vomited some phlegm. The doctors’ offices at Scott & White ask that you arrive at least 20 minutes before your scheduled appointment. Dad’s vomiting had delayed their departure and they could not arrive during the prescribed window. Our family has an aversion to being late, so Mom called the doctor’s office to ask whether they should reschedule their appointment. The clerk who answered the phone assured Mom that the office builds in a 15-minute late check-in time, and that they should not worry about arriving too late. I wondered if the clerk laughed to herself that a patient was worried about arriving late. I suspect quite a few patients are either late or no-shows.

Even with their minor setback, my parents arrived on time to the doctor’s office. When they arrived at the clinic, Mom let Dad off at the door of the clinic so that he could check in while she parked. This simple act of letting Dad out in front of the building was a huge accomplishment. It wasn’t that long ago that it took an additional person in the car to help him out and into a wheelchair.

The visit with the doctor was a bust. He didn’t see anything wrong and said that he wasn’t sure why Dad was there. Unlike his back, Dad’s prostate wasn’t causing him any pain, so the visit seemed very anticlimactic.

The home care nurse was scheduled to stop by the house today to check on Dad. My parents not only wanted to arrive on time to their appointments and events, they expected the same of others as well. Unfortunately, the home care providers were not always so punctual. My parents didn’t have a busy social life, but they ensured that they were available to the providers at the appointed time, and would hold lunch, shopping, visits, or other things until the nurse arrived. Today the nurse was an hour late. She stayed long enough to see if Dad had had any falls and to check his vitals, which were good.

Dad also had an appointment today with Kristen, his swallow therapist. Unlike every other provider, you could set your watch by her, and as usual, she arrived on time. Today’s appointment was her first visit since Dad was readmitted to home care. Mom was glad to see her again, and Kristen worked with Dad for about an hour. Dad promised to work on his exercises over the weekend, and I hoped that he would.

April 9. During dialysis this morning, Dad’s systolic blood pressure dropped below 100, but the nurse told him not to take his midodrine unless the systolic pressure dropped below 90. After dialysis, Mom thought that Dad seemed weaker than usual. I was surprised that he had been advised to hold off on the midodrine. For months, he had been told that his systolic pressure needed to exceed 100. Mom said that Dad didn’t take the pill because they didn’t want to go against the doctor’s orders, which almost seemed like a joke. I asked her if she had been able to keep a straight face when she said that. I would be back in Temple later today and would try to stop by the dialysis center next week to speak with the nurse about Dad’s changing blood pressure guidelines.

Stan left Houston for Temple at 9:00 A.M., and I left a couple of hours later. I used my trips home to get haircuts, change out clothes, and to run errands. I could seldom start my return trip to Temple before noon.

April is prime time in central Texas for wildflower viewing. During my drive to Temple, I encountered heavy traffic near Chappell Hill, the location of today’s Bluebonnet Festival. The abundance of wildflowers made the otherwise boring drive a lot more enjoyable.

I eventually arrived at my parents’ home a little after 2:30 P.M.

April 10. When Stan was in Temple, Dad usually skipped church. Sometimes he and Stan would play cribbage, and other times Dad had a list of tasks for Stan. Before Dad entered the hospital 11 months ago, he would have handled all but the most difficult tasks himself. Now, Dad often needed Stan’s assistance many smaller tasks, especially with his recent back challenges.

When Mom and I returned home from church, Stan told me that Dad was in a lot of pain. He noticed that Dad sometimes experienced a sharp pain with certain types of moment. After hearing this news, I gave Dad an Extra Strength Tylenol along with his probiotic. Fortunately, the Tylenol seemed to take effect in a short time and eased Dad’s pain when he moved.

Dad didn’t want to eat lunch, but he sat with us while we ate, and he agreed to drink a bottle of Ensure. Because he didn’t want to eat, I talked a lot about removing the PEG tube. It was imperative that Dad be able to take in enough nutrition by mouth sustain himself. During our discussion of the visits to Dr. Pfanner’s office (the gastroenterologist), it became apparent that Dad misremembered the number of times he had been to the doctor’s office and thought that he had been there one more time after the MBSS. During our discussion, I agreed with Dad that we would have the PEG removed during his next appointment with Dr. Pfanner, even if it meant that we had to sign an AMA. As I agreed to this plan, I hoped against hope that the doctor would want to pull the PEG during the next visit. The last time that I signed an AMA on Dad’s behalf, I was reported to Adult Protective Services. I was reasonably confident that that wouldn’t happen again, but once bitten, twice shy. Signing an AMA during home care also caused the patient to be discharged from home care.

After lunch, Dad and Stan went outside to finish up some chores that involved electrical wire. When they finished with that manly task, they watched the Masters golf tournament on television.

Stan left for Houston shortly before 5:00 P.M. My parents and I watched some TV before I got myself in gear and prepared a casserole for dinner. We ate stylishly late and weren’t finished with dinner until after 8:00 P.M. I was becoming a bit concerned about Stan. He had left here over three hours ago and I still hadn’t heard from him. I was just about to call him when I received a text message stating that he had just arrived home safe and sound. With all of his travels back and forth between Houston and Temple, I was always worried that something might happen to my lifeline, and I was relieved when I learned that he was home.

April 11. Dad woke up before 6:00 A.M. and got himself dressed without waking Mom. When I heard him wheel past the office, I stopped working for a few moments to prepare a cup of hot water for him. While he was still having trouble swallowing thin liquids, drinking hot water was preferred over coffee. Since his surgery, he had not liked the taste of coffee and preferred the water, so not being able to drink coffee was not a hardship for him.

When he finished his breakfast, Dad moved into the home office to prepare their taxes, but found that the room was too dark for him to read the instructions. I agreed that it was a bit dark, but because I spent my day looking at a computer screen, I hadn’t been bothered by the dimly-lit room. It bothered him, so after he found some CF light bulbs, I set up the ladder and replaced the burnt out bulbs. The difference was like night and day.

While I was in my 10:30 A.M. meeting, Dad vomited some applesauce and probably some of his meds. The home care nurse stopped by at 11:30 A.M. I told her that I was concerned about the vomiting, but she said that his vitals were great. Dad complained about some non-specific pain that kept moving around, but because he didn’t have an elevated temperature, it didn’t seem like he had an infection. I was frustrated by and concerned about his little setbacks.

After lunch, I worked until Kristen arrived for Dad’s swallow therapy. She had him swallow water and he did very well. While she was here, Julie from the Speech Pathology department at Scott & White called and said that as far as they were concerned, Dad could have his PEG tube removed. She said that they had recommended that the PEG stay in place until after his surgery so that we could accommodate any problems that might result from post-operative delirium. Because he did well during that time, it was up to the gastroenterologist to determine if Dad could get adequate nourishment by mouth. This news was a relief, and it felt like we had tackled one of our major hurdles.

After I stopped working for the day, I took a short walk and called one of my girlfriends. She said that she didn’t think that her father would survive his colon cancer. Her husband’s mother was struggling with a bout of pneumonia, although she seemed to be doing well. Although it was comforting to talk with someone who understood the source of your stress, this was one of those times when misery didn’t like company.

My parents and I enjoyed a nice evening together. After our happy hour and dinner, we played Oh Hell. It was a close game, but I beat them by three points. On days like this one, I tried to soak up my parents’ essence so that I could remember every detail about their laughter and their good humor.

Thank goodness for the (relative) calm after the surgery

Published on April 3, 2018April 9, 2018 by mellowdee55Leave a comment

April 2, 2016. After staying up last night until after 11:00 P.M. following Dad’s fistula fiasco, the 4:30 A.M. alarm seemed to come just moments after I placed my head on my pillow. By the time that I had dressed and started the coffee, the light was on in my parent’s room. Dad’s incision site had bled only slightly during the night. After eating breakfast and administering meds, Mom and I took Dad to dialysis. When we arrived, he weighed 153.34 lbs., which was about 3 lbs. more than his dry weight. After getting him settled in for his three-hour session, Mom and I left for home around 7:30 A.M. When we returned to pick him up, his RN, Melissa, showed him how to find the thrill in his arm. Following fistula surgery, when you place your fingers over the fistula, instead of feeling a pulse, you feel a whooshing that feels almost like a cat’s purr. This whooshing vibration is the thrill. His post-dialysis weight was 150.92 lb.

Dad’s fistula would need to cure for a couple of months before he could use it for hemodialysis. Dad’s surgeon, Dr. Jaffers, had told him that he should check his thrill on a daily basis. If he could not feel it, he should contact his doctor, and he’d probably need surgery to repair the fistula.

While my husband, Stan, was in town, he mowed the lawn and sprayed weeds. After lunch, Dad took a nap, and Stan and I drove to the Miller Springs Nature Center near Lake Belton to find some accessible trails that Dad might be able to walk. The trails seemed a bit less than optimal and appeared to be a little damaged. I was pretty certain that Dad would have a difficult time navigating them with a cane or a wheelchair.

My lack of sleep was starting to take its toll on me, and when we returned home, I needed a nap. Fortunately, I woke up in time for happy hour. After dinner, dad was feeling well enough to play cards, and I won.

April 3. According to Mom, Dad’s incision seeped a bit more during the night. While Mom and I went to church, Dad and Stan stayed home and played cribbage. As Mom and I were walking into the church, my phone rang. It was the home-care nurse, Paula, and she wanted to come by and admit Dad into Scott & White Home Care. When our friend and nurse practitioner, Sue, heard about Dad’s ordeal with the fistula surgery, she was more than a little exercised, and she could not believe that the incision was still seeping blood. She said that “bleeding wasn’t supposed to happen.” I told her that I have hundreds of pages of documentation full of things that “shouldn’t have happened” to my father.

Because Sue had been so worried about Dad’s continued bleeding, we checked Dad’s dressing as soon as we returned home. Paula arrived at 1:00 P.M., shortly after we had finished replacing the adhesive on the dressing. Paula offered to change his dressing, but we decided to wait until we heard from Dr. Jaffers. Because she was part of the Scott & White network, she was able to email Dr. Jaffers to see how soon we could have the dressing changed.

It was comforting to have my nursing lifeline back.

April 4. I logged on to Dad’s MyChart account at Scott & White and saw that Dad’s appointment with Dr. Jaffers had been rescheduled to a later date. At the start of his office hours, I called Patsy, Dr. Jaffers’s secretary, to see why our appointment had changed. Her phone number had been one of the numbers that I had called in response to Dad’s bleeding after the surgery. When she heard that it was me calling, she said that she was getting ready to return my call from Friday evening. I also told her about the drainage of Dad’s dressing and thought that it should be changed. When I told her that I had photographed it with my phone, she asked me to text the photo to her cell. She soon returned my call and told me to take Dad to the dialysis center and have the nurses change his dressing. To ensure that we wouldn’t encounter a problem there, I called the charge nurse to let her know that the doctor had instructed us to drop by. Dad and Mom left a few minutes later and had no problem getting Renee, one of the nurses, to change the dressing. She and some of the others there were a little disturbed about the problems that he had encountered. Unbelievably, it seems that he was the first person ever to have problems of this nature. Of course.

This afternoon while I was working, I looked out the window and saw Dad holding the cane with his right hand and dragging a garden hose with the arm that had just had surgery. I immediately ran outside to help him. My major concern was that he might fall, but he also seemed out of breath, and then there was the issue with his arm. I got him to rest for a minute before he headed out to the garden to see my mother, who was planting cucumber seeds. It was pretty warm out, so I wasn’t wild about either them being in the direct sun.

At 4:00 P.M. I ended work so that I could download some bank statements and transaction statements for Dad. We finished at 4:30 P.M., and then I took a short walk to stretch my legs. We had a nice happy hour and watched the news before eating a tender chicken that had been stewing in a crock pot. We played cards after dinner, and my mother won. We hit the hay a little early. I did a little packing and gathering for my trip home on Wednesday, two days from now.

April 5. I was up early and had to wake Mom and Dad with the “good morning” song. They were moving a little slow but they were up and out of the house by 6:15 A.M. When Mom returned from dropping off Dad at the dialysis center, she said that they planned to remove 3,300 ml of fluid today, but they would also add fluid, so the net amount removed would be closer to 2,000 ml. I’m no nephrologist, but I wasn’t sure why they didn’t just remove 2,000 ml.

After lunch, Dad took a nap. He was sleeping soundly, and I had a difficult time waking him. He finally got up at 2:45 P.M., 45 minutes after I started trying to wake him. The rest of the day went well. He and I talked about dinner plans for Saturday, and I went to the store to buy him a battery and some food. After dinner, we played cards, and Mom won.

It was after dinner when the day went to Hell. It seemed to me like Dad was out of breath. Concerned, I checked his oxygen level, and it was fine, but his heart rate was 132. I had been hoping that he would start weaning himself from the wheelchair, but the more we talked, the more apparent it became that he wasn’t getting rid of the wheelchair. According to Dad, the wheelchair was the only comfort that he had. Furthermore, he didn’t trust Dr. Pfanner and thought that he’d keep coming up with excuses for not pulling Dad’s PEG tube. Dad then shared a bucketful of excuses for not walking or getting rid of the wheelchair and not exercising. When our discussion turned into a heated argument, Mom came into the room and asked what we were arguing about.

Dad seemed to be in the midst of a terrible pity party, and he couldn’t seem to see his way out. I was a little concerned because he seemed depressed. I’m no expert, but I knew that he was in pain, which probably contributed to his attitude and outlook on life.

I was too tired to continue the fruitless conversation, and I went upstairs to bed. I could hear the television, and it was on for quite a while. Evidently, Dad went to bed late after watching Ted Cruz give his victory speech in Wisconsin. By the time he went to bed, he didn’t like Ted Cruz.

April 6. I dragged myself out of bed at 3:45 A.M. and was logged on to work 15 minutes later. Mom and Dad were up by 6:00 A.M., and I stopped work at 7:30 A.M. so that the three of us could eat Mom’s homemade banana muffins for breakfast.

At 10:00 A.M., I took a brief break from work when Kathleen arrived to administer a physical therapy assessment for Dad. Following her assessment, she said that she would put him on an aggressive rehab plan so that he could walk with or without a cane. Kristen, the speech therapist, also called this morning and scheduled a session time with Dad on Friday afternoon. I would be in Houston on Friday and was disappointed that I wouldn’t get to see her.

I called Dr. Pfanner’s office and tried to get a straight answer from his nurse about whether or not Dad needed to take another MBSS before he could have the PEG tube removed. After not getting a straight answer, I emailed her again and restated my question in writing.

I left Temple for my home in Houston at 12:43 P.M. and arrived home shortly after 3:30 P.M. I was pretty tired for the last 40 minutes of the drive and forced myself to stay awake. Stan got home from work about an hour later.

It seemed like I had been gone for quite a while, and it was good to be home again with Stan and our cats. Stan fixed us a nice dinner of turkey breast, and it was moist and yummy. After dinner, we made reservations for our trip to Wisconsin this September. My friends had surprised me with a girlfriend trip to Wisconsin to celebrate a milestone birthday last year, but my father’s situation had required a postponement of our plans, and this trip was our time to get together at last.

April 7. Because I would be working from home today, I was able to sleep in until 4:00 A.M., and lounge around and watch the news until 5:30 A.M. I finally got to my home office above my garage at 6:00 A.M., close to the time that Mom and Dad were on their way to the dialysis center back in Temple.

Back in Temple, Dad had 1,800 ml of fluid removed during dialysis and his nurse also removed his dressing. Sue, the dialysis nurse practitioner and our friend, had been very concerned about Dad’s progress and stopped by to ensure that his fistula was healing well.

I worked until 5:00 P.M. and then called Mom for a quick update on their day. After Dad’s nap, they spent quite a bit of time outdoors in their garden, planning a drip line. When I called them, they were watching the news and enjoying happy hour.

After I spoke with Mom, I set up an account with WordPress so that I could begin sharing Dad’s story, a story that I hoped would be ending soon.