March 23, 2016. For months, Mom had had a bad cough. It started last summer while Dad was in the hospital. The hospital rooms had been dreadfully cold, and the cold air seemed to have taken its toll on her. She had gone to her PCP, Dr. Poteet, about the nagging cough, and he ordered a CT scan. A couple of days ago, Dad’s PCP, Dr. Sarla Patil, had ordered a CT scan of Dad’s back. Through fortunate scheduling, they had adjacent CT scan appointments today and were able to go to the imaging lab together.
Dad wanted to prepare his family-favorite Locke’s Lasagna for dinner, but he was in so much pain that he could barely lift his arms. I told him that I would stop work at 4:00 P.M. and help him fix dinner. Mom and I both helped him, so preparing dinner turned into a family activity.
I had hoped that we would hear from one of the doctors today with some test results, but no such luck. While we were playing Oh Hell, which Mom won, we started betting on which doctor would call first with CT scan results.
March 24. From the time that he started having dialysis nine months ago, Dad had had problems with very low blood pressure during dialysis. The dialysis system works best when the systolic pressure exceeds 100. Sometimes removal of fluid was stopped when his blood pressure dropped, and in extreme cases, dialysis was stopped altogether. To remedy this problem, the doctor had prescribed that Dad take two midodrine pills before dialysis and then again at the halfway point, which would help keep the systolic pressure at a safe level. Today at halftime, his systolic pressure was 153. Without checking with the nurse, Dad took his second dose of midodrine. A few minutes later, his systolic pressure spiked to more than 170. After this little incident, the doctor advised Dad to take the midodrine only if his systolic pressure fell below 100. I just hated excitement during dialysis.
We finally received a call from Dr. Patil about Dad’s CT scan, which shed some light on the cause of his pain. Evidently, during Dad’s extended time in bed, he had developed severe osteoporosis. At some point during the hospitalization or recovery, he developed seven stress fractures in his back. His recent fall and the standing and sitting during church most likely exacerbated his condition, which triggered his extreme pain. Unfortunately, the doctor didn’t offer any suggestions to deal with the pain. However, she said that she was referring Dad to an endocrinologist. She probably assumed that we knew why she wanted Dad to see this specialist, but I had no idea what an endocrinologist could do for Dad’s back pain. Mom had yet to hear from her doctor.
During most of his trips to Temple, Stan had left our cats at home alone. This weekend, because Stan would be gone an extra day, I wanted our cat sitter to tend to them. I had been texting Vickie Lynn for a couple of days, but she had not responded. Because of our situation, I had not needed her services for several months, but we had known each other for over 10 years, and I couldn’t understand why she hadn’t responded to me. I finally went old school and called her home phone and left a message. I was completely blindsided when her husband called to tell me that Vickie Lynn had died from cancer four months earlier. He had taken over her pet sitting business and said that he would take care of our cats this weekend. I always felt unsettled when I learned that someone who I thought was among the living had in fact died.
March 25. At 2:00 A.M., something woke Mom and she noticed that Dad had slid about halfway off of the bed. It took some doing, but she got him back into bed. He’d been sleeping very close to the edge of the bed lately and he’d come dreadfully close to falling out of bed.
Dad was still in a lot of pain. After 8:00 A.M., I called Dr. Patil’s office and asked her nurse about Tylenol and other pain management options for Dad. She said that she would text the doctor with these questions and then get back to us, but she never did. We’d now have to get through the weekend without knowing what drugs he could take for pain. Under normal circumstances, Dad would take something like Extra Strength Tylenol, but renal issues often determined what medicine he could take.
Stan arrived from Houston and immediately started doing yard work. Before the day was over, he had mowed the back lawn. During the afternoon, I took a break and the four of us drove a mile away from home to a huge lot that was filled with wildflowers. The lot was a favorite of the locals for wildflower photos, and I wanted to have a photo of the four of us among the iconic symbols of springtime in Texas.
After a yummy dinner of salmon and a broccoli, rice, and cheese casserole, which I prepared, we played Oh Hell, and Stan won.
March 26. On dialysis days, Mom and Dad woke up at 4:00 A.M., but this morning I was the first one in the house to wake up, although I had planned to sleep in. When I checked on my parents, I noticed that Dad was again so close to the edge of the bed that he was practically falling out of bed. Moving around in bed was painful, so at night he would lie down close to the edge so that he would not need to move much when he wanted to get up.
Although his back pain was slowing him, my parents left for dialysis on time, a few minutes after 6:00 A.M. Stan was still sleeping, so I decided to catch up on a little work. I had just sat down with a cup of coffee when the phone rang. I don’t like 7:00 A.M. phone calls, especially from my mother when she’s with Dad at the dialysis center. I was relieved when I learned that she was calling to tell me that she had left the garage light on when she left. As I turned off the light, I had to laugh to myself because I knew that Dad had noticed the light and had told her to call me.
Stan woke up shortly before Mom got home. Mom told us that Dad had gained about 2 kg since Thursday, so they planned to remove 2,000 ml of fluid today.
After breakfast, Stan and I drove to the nearby town of Cameron to look for wildflowers. We didn’t find any in the place where I had seen them earlier, but we stumbled upon an old cemetery that had millions of flowers. I had intended to take some infrared photos on the way home, but clouds materialized and blocked the sun. Infrared film photography requires strong sun. It was a running joke that clouds would materialize whenever I pulled out my tripod.
After lunch, we helped Mom plant tomatoes in my parents’ vegetable garden, and Stan did some more mowing and chores around the yard. Stan wouldn’t be here tomorrow evening for Easter dinner, so we had our Easter dinner tonight. Mom prepared a ham and I roasted a variety of root vegetables. Mom topped off the meal with a yummy homemade strawberry pie.
We played a cutthroat game of Oh Hell. I won, but Mom was a close second. As he was getting ready for bed, Dad announced that he wouldn’t be attending church tomorrow because of his back pain. Mom and I were disappointed. We had scheduled Dad’s fistula surgery for next weekend so that he wouldn’t be prevented from attending Easter services by any post-operative problems. So much for advance planning.
March 27. I couldn’t seem to catch up on my sleep. This morning, a sharp cramp in my right leg woke me up at 5:00 A.M. As long as I was up, I decided to work on my laptop in the living room. While I was there, I overheard an unsettling conversation in my parent’s room. Evidently, my father’s pain was intense, and it sounded like he was suggesting that he stop dialysis because he couldn’t live with the pain.
When Mom came out of their bedroom, she told me that Dad wanted us to make an appointment with Dr. Patil to see if there was anything that she could offer him that would help him to manage his pain. Dad had also said that if she could not see him this week, we should try to get an appointment with someone else.
When Mom and I left for church, Stan and Dad were playing cribbage. The church was lovely, and the service included a baptism. Consequently, the service ran long and we didn’t leave for home until 12:30 P.M. After the service, I asked our friend Sue if she could recommend another PCP for Dad. Sue is a nurse practitioner with Scott & White dialysis center and immediately recommended her friend, Dr. Mike Martin.
Stan and Dad were still playing cribbage when Mom and I returned home. Stan left for Houston a short time after lunch, and Mom, Dad, and I tended to the garden and watered the new tomato plants. Sue had told us that we could give Dad Tylenol for his pain. When I checked their medicine cabinet, I found a bottle of Tylenol; unfortunately, it had expired three years ago. I drove to Walgreens and purchased something a bit more current.
We watched the news, which was growing more depressing with each passing day. We didn’t play cards tonight, but Dad and I created a recipe for ham loaf by combing recipes and adding a few extra ingredients for good measure, and we intended to try it on Wednesday. Dad had been collecting recipes—some of his and some of mine. I enjoyed working with him in the kitchen and planning meals. It took me back to our time together during my childhood. Sometimes my mother traveled for the League of Women Voters and left Dad and me to fend for ourselves. Before she left, every meal was planned and when she returned home, there wasn’t a leftover in sight.
March 28. It was a workday for me, so I was up early. When I heard Mom get up, I asked her about Dad, and she said that she thought that he had had a better night’s sleep last night. She said that he had been up a couple of times during the night, but at least he wasn’t in a ball at the bottom of the bed or hanging on the edge of the bed when she got up.
When Dad got up, he announced that he would take two doses of Tylenol today instead of the three that had been suggested. I wasn’t sure why he wanted to bear the pain, but it was his pain and his decision.
Mom left at noon today to attend her book club. While she was gone, Dad took a nap and then he and I walked out to the garden to water their young tomato plants. After tending to the garden, we walked around the backyard and checked out all of the fruit trees. The blossoms were starting to fall and you could see hints of the fruit that would take their place. Unless we got another freeze, the loquat tree might bear some fruit.
Mom returned home from her book club around 4:15 P.M., and Penny, the new Home Care nurse, arrived 15 minutes later. When I expressed my concerns about Dad’s ability to swallow after surgery, she said that we should insist that he be coherent and able to swallow before he could leave the hospital, especially on a Friday. After pestering every medical person that I encountered about Dad’s possible post-op challenges with swallowing, I was beginning to feel like we might be able to ensure that we might have some control over the situation.
Only four more days until Dad’s surgery.