January 1, 2016. A couple of minutes after midnight I heard grunting, sounds coming through the baby monitor. When I went downstairs to check on Dad, he said that he needed to get up now. As I started to unhook his feeding tube, I asked him why he needed up. He said that he was annoyed because he had overslept and had missed the Rose Parade. When I explained to him that it was midnight and not noon, he looked relieved and smiled. As long as I was there, I suctioned his trach, and after we wished each other Happy New Year, I was on my way back upstairs by 12:45 A.M. He had had a lot of secretions, so I was grateful for the false alarm.
At 6:00 A.M., I heard Dad and Michell talking and decided that it was time for me to get up to administer Dad’s morning meds and breathing treatment. His secretions seemed a bit thinner now, but his oxygen saturation was still too low for me to consider lowering his oxygen.
As I had learned at midnight, Dad’s big plan for the day was to watch the Tournament of Roses Parade, a New Year’s Day tradition. However, the parade wouldn’t start for almost three hours, which allowed him time for a delightful breakfast of green oatmeal, and some walking and sink exercises. The best place to watch the parade was in my parents’ sunken sunroom. Stan, Michell, and I spent a few minutes working out the logistics for getting him out of the wheelchair, down the step and transferred back into the wheelchair so that he could continue receiving tube feed and oxygen without damaging the floor. It seemed like it should be a simple maneuver, but Dad’s tubes and wires complicated his already-limited mobility.
Tracy, the nurse, dropped by at 1:00 P.M. and said that although Dad was still suffering from the effects of his cold, she thought that we were doing everything right. At 2:00 P.M., Kristen arrived for Dad’s swallow therapy. I was continually impressed by the home-care caregivers as they kept up their regularly-scheduled visits during the holiday. I had worked in corporate America for more than 20 years, and only the newest employees worked around, let alone on, the holidays.
Dad was still very congested today. Before we played cards, I had to suction him so that he could enjoy our game. By 8:30 P.M., the first day of 2016 was just about over. After I administered Dad’s meds and a breathing treatment, I treated myself to a breathing treatment to combat my own chest cold. I had never used a nebulizer and was surprised at how well it was clearing up my congestion.
January 2. During the night, I heard coughing and talking through the baby monitor. Dad’s secretions had kept him awake, but Michell was able to convince him to suction himself. Michell was concerned when she saw blood in his secretions, but attributed the blood to a nosebleed that he had had a few hours earlier.
When Michell helped Dad out of bed at 5:00 A.M., I also got up, and after changing into my scrubs, I went downstairs to see how he was doing. After administering a breathing treatment, the morning meds, and letting Dad wash his face and brush his teeth, Michell washed his hair with some no-rinse shampoo. Before Gale had left us, she had encouraged me to purchase some no-rinse shampoo, but I couldn’t find it in our local stores. I finally found it online on December 26, and it had arrived a couple of days ago. I was pleasantly surprised at how well it worked.
After Dad was as clean as Michell could get him without a shower, we all ate breakfast together. Mom prepared Dad a special breakfast of Cream of Wheat topped with a couple of peach slices. When we finished breakfast, I administered another breathing treatment, and then Mom and I went shopping in Waco, approximately 35 miles north of Temple, leaving Stan and Dad to play cribbage and stay out of mischief until our return at 1:00 P.M. Between Dad’s long hospitalization and Mom’s stroke, Mom had lost a lot of weight and needed some new clothes. The shopping trip also gave us a much-needed respite and a chance to spend some time together.
After Mom and I returned home, I ran a few errands in Temple and picked up another prescription for Dad. Before I left, I told Dad that I would change his trach when I returned, but by the time that I had returned, he was sleeping. Not to be deterred from my goal, I changed his trach as soon as he woke up. In the seven days since I had last changed it, it had become pretty gunky, but the secretions had not solidified in the trach. Dad hated to stay in the bedroom, which was the only place where he received the moistened oxygen. I often worried that secretions were hardening in his trach, which would then narrow his airway.
Dad never kept the outside Christmas decorations up past New Year’s Day, and he was chomping at the bit to have them taken down. With the assistance of Stan and Michell (the tallest person in the house), Dad had the decorations removed and packed for next year.
Now that Dad was able to eat, Mom and I tried to come up with menus that were appealing to everyone in the house. We also had to ensure that the food was not red or white so that I could monitor Dad’s secretions for signs of aspiration. Mom wanted a side dish to accompany the roast that she planned for dinner. I reminded her that many trendy restaurants offered mac-and-cheese as side dishes. Not only was mac-and-cheese tasty, but it was also orange. Keeping with the orange theme, Mom also made butterscotch pudding for dessert. As we had hoped, Dad was able to eat the mac-n-cheese and pudding.
After dinner and our daily game of Oh Hell, I gave Dad another breathing treatment of albuterol. This treatment seemed to kick up his secretions, and I had to remove a lot of secretions before he went to bed.
Shortly after Stan and I went to bed, we heard an exchange between Dad and Michell through the baby monitor. Evidently, Dad was itching so much that he agreed to let Michell give him a mini sponge bath. More startling than him agreeing to the bath was that he agreed with her that he should have let her do it several days ago when she first suggested it.
January 3. When the alarm went off at 3:40 A.M., I could barely drag myself out of bed, and Michell was also forcing herself to get up. After walking around like a zombie for about 30 minutes, I finally woke Dad at 4:10 A.M. I wanted to let Mom sleep, so I fixed him a breakfast of Cream of Wheat and peaches. To ensure that I fixed his breakfast as Mom would, Dad monitored and corrected me while I prepared his meal. After breakfast, we were able to squeeze in a saline breathing treatment before the HOP bus arrived to take him to dialysis.
While Dad and Michell were at dialysis, Mom and I went to church. When we returned home at 12:30 P.M., we found Dad and Stan involved in a game of cribbage. After Dad played a most spectacular hand and beat Stan, we had lunch. Dad ate only a small portion of applesauce, so I was glad that he was still receiving Nepro. Dad had lost so much weight that we, and the dietitians, could not justify reducing his Nepro.
As soon as lunch was finished, Stan returned home to Houston. The holidays were over, and tomorrow was the first working day of the new year. Dad was ready for a nap, but because of his aspiration precautions, he could not lie down for an hour after eating. Because he had to sit upright, he decided to go into the sunroom to watch the Texans football game. Michell and I were getting better at this transition. We still hadn’t told the physical therapist that we were letting him step into this room. By 3:00 P.M., the football game finally lulled him into a drowsy state while sitting in his chair. Before he fell asleep, we helped him out of the sunroom and into his wheelchair so that he could go to his room for a nap.
I woke Dad at 4:30 P.M. so that I could administer some meds and a breathing treatment before happy hour. Unfortunately, our happy hour was anything but happy. I don’t remember how it started, but we had a terrible argument about his exercising. Lately, Michell had been unable to get him to exercise, and he made it very clear that he would exercise when and if he felt like it, and it wasn’t doing any good anyway. We had a terrible argument about this, his new lot in life, and my new terse way of talking to him. The primary reason that we had hired aides to assist us was to ensure that we could maintain some semblance of normal familial relationships. When a family member changes roles from child or spouse to the caregiver, it can strain normal relationships. I had been responsible for taking care of him for a few months and had been his uber-advocate during his hospitalization. Now that he was getting better, he was beginning to resent my telling him what to do. The more that he angrily pushed back on my efforts to care for him, the more ready I was to pack my bags and go home. Following our exchange, I heard Dad tell Mom that “she was the only one that mattered.” I was beginning to feel a bit unappreciated.
I had prepared a salmon casserole for dinner, which Dad was able to eat. My parents have a fig tree, and during the summer Mom had made some fig jam, which Dad enjoyed for dessert. Everything seemed very civil for the rest of the evening, but I was still a bit miffed.
No amount of arguing would keep us from playing Oh Hell after dinner. When we finished playing cards, Michell and I administered his meds and breathing treatment, and Dad was ready for bed by 8:30 P.M. From what I heard through the baby monitor, Dad needed the Yankauer suction wand around 10:30 P.M., but I didn’t hear him again that night. During my regular call with Stan, I unloaded my frustration about my situation here and my desire to leave. At the end of our call, I was somewhat less agitated.
January 4. Today was the first working day of 2016, and I was up and logged on to work before 4:00 A.M. Today was an important day for Dad, and one that I had been looking forward to and nervous about for a couple of months. The appointment with the pulmonologist was very important, although I didn’t think that Dad realized its importance.
Tracy, the homecare nurse, stopped by at 9:15 A.M., and said that Dad’s lungs were clearer, so it seemed that the breathing treatments that she had recommended had helped. I took a break from work at 11:15 A.M., and the four of us had a quick lunch. Shortly after lunch, the HOP picked up Dad and Michell; Mom and I followed the bus to the clinic for Dad’s 1:00 P.M. doctor’s appointment.
When we were ushered into the examination room, Dad’s world began to change. After Mom and I provided a short update on Dad’s condition and treatment since his discharge, Dr. Badri Giri said that he was surprised that Dad had not seen Svenja (the trach goddess), or anyone else in the medical profession, about the trach. He immediately paged Svenja for a trach consult. Although she was available, she was about as far from us as she could be while still on the hospital grounds, but would be there within 10 minutes. While waiting for Svenja, Dr. Velazco stopped by, and there were hugs all around. Dr. Velazco, another pulmonologist, had not seen Dad since late August, and he was thrilled to see how Dad’s condition had improved. The hugs continued when Svenja arrived. She and I spent a few minutes catching up and then she started to check out Dad’s trach and stoma. I respected and liked Svenja and was nervous that she would find a problem that was related to Dad’s care. When she said that Dad’s stoma looked good, I exhaled the breath that I didn’t realize that I had been holding. After she and the doctor conferred for a few minutes, they decided to downsize Dad’s trach from a size 8 to a size 6 trach, which meant that the outside diameter of the trach was smaller. The smaller diameter would still be large enough for us to keep using our FR14 suction kits and would enable the stoma to start closing. She deftly replaced the trach within a few moments. Svenja and the doctor had considered removing the trach but decided to wait about a month until he completed more swallow therapy. Instead, she red-capped the trach, which meant that Dad was now breathing through his nose and not the opening in his trach. Dad had not breathed through his nose since June 8, 2015, almost six months earlier. On the way out, we saw Dr. Hayek in the hall and stopped to say hello to him. Dad had no recollection of Svenja and Drs. Hyack and Velazco, but these three health care providers had been important players in Dad’s recovery at Scott & White Memorial, especially after he aspirated in July. On our way out, we scheduled Dad’s follow-up appointment in February.
We returned home from the doctor’s appointment at 3:00 P.M. Michell was able to engage Dad in some swallow-therapy exercises, and I logged back on to work for another couple of hours.
The red-capped trach introduced many changes in our lives. For starters, we no longer needed the very noisy and heat-generating oxygen concentrator and attached nebulizer. We also would not need to use the oxygen tanks. The difference in Dad’s bedroom was startling, starting with the quiet, which was almost deafening. The temperature dropped at least five degrees, which would be a welcome change for the aides, who sweltered during the night. I would still need to administer trach care, which included changing out the trach every week and checking for aspirated food particles in his secretions. The smaller diameter of the trach would make handling secretions easier for Dad, too. When I checked Dad’s oxygen saturation, it was 100%!
We were all in much better spirits during happy hour and dinner, not to mention cards. Once again, I was practically giddy with excitement about Dad’s progress, yet on edge that something would happen that would cause Dad’s condition to regress.
After our full and exciting day, Michell and I administered Dad’s meds and trach care, and he was drifting off to sleep by 8:15 P.M. After the wonderful events of the day, I couldn’t wait to call Stan to share the good news.