January 22, 2016. Today started out well. I started to work at 3:45 A.M. and stopped about three hours later for a breakfast break. I was surprised to learn that Dad was still sleeping. A few minutes after I returned to work, I heard Dad and Dianne talking in the bedroom. After she unplugged him from the tube feed, he used the walker to go into the closet to pick out his clothes for the day, and then he got dressed. Dianne later told me that it was a blessing to witness how far he had come.
Dad, Dianne, and Mom ate breakfast at 8:15 A.M., Dad having his usual Cream of Wheat with honey, and a pear. About 90 minutes later, he said that he didn’t feel well, and then started vomiting. Surprisingly, he vomited only mucus and not his breakfast. I was perplexed about what might have caused the vomiting. Fortunately, Stephanie, the nurse, had already called us and was scheduled to arrive within the hour.
When Stephanie arrived, she couldn’t shed any light on why he might have been sick. She said that although he seemed to have a lot of phlegm, his lungs sounded clear. She and I then had a long talk about the amount of fluid that was being removed from him during dialysis. He didn’t appear to be retaining any fluid, and his dry weight seemed low to me. Stephanie was no nephrologist, but I asked her if she thought that measuring Dad’s ankles every day might help us to determine his level of fluid retention. She said that she thought that that was a good idea and suggested that we give it a try.
Janet stopped by for Dad’s occupational therapy session, and she and Dad had a long discussion about his lack of exercise between their sessions. He didn’t like to do it, and I doubted that anything she said would make any difference. She said that she would return next week, but I didn’t know how much more we’d see of her after that. She had been working with Dad on building up his core, and today I was pleased when I learned that she would lead both Mom and Dad through the exercises. I had Dianne record the session so that they could repeat the exercises when Janet wasn’t here.
When Janet left, I took a break from work to eat lunch. When I returned to my computer about an hour later, I was greeted by the blue screen of death. I called my employer’s help desk and ran through some diagnostic tests to determine if we could fix the problem, but the tech finally said that he would open an urgent issue. I was lucky. The now-dead computer was very new, and I still had my old laptop with me. The IT tech from the Houston office called me and said that he was sending me a loaner computer via FedEx, which meant that I wouldn’t need to drive 60 miles to our Austin office, which had been a concern. I spent the remainder of my workday using my old computer to work on a website. I was thankful that I had enabled daily backups of my computer.
While I was playing with blue screens and the help desk, Dianne and Dad were walking around the house and running through his balancing routines at the laundry room sink. During happy hour, he navigated himself into the sunken sunroom. He still needed some assistance to step out of the room, but his skill with the walker was improving.
We were finished with our dinner of enchiladas and chocolate cake before 7:00 P.M. Dianne was getting better at Oh Hell and was tonight’s winner. We were finished with our card game by 7:30 P.M., and by 7:55 P.M. Dad was drifting off to sleep.
January 23. Although it was Saturday morning, I woke up shortly after 3:00 A.M. While I was lying in bed wondering why I was awake, I heard a loud crash through the baby monitor. I jumped out of bed and ran downstairs and into Dad’s room. It seemed that he had swung he feet out of bed and was attempting to get out of bed, forgetting that he was attached to the tube feed, which hung on an IV pole. Having the contraption fall was only a small problem. The fact that Dianne had not secured the top of the tube-feed bag when she refilled it was quite another. The sticky Nepro seemed to have been sprayed all over Dad, his bed, and the floor. Once again, I was very thankful that Stan had purchased floor mats to cover my parents’ bedroom carpeting.
While Dianne was cleaning up after Dad’s handiwork, Dad wheeled himself into the bathroom and got himself cleaned up for breakfast. After his breakfast of Cream of Wheat, he wanted another cup of hot water, which prompted another knock-down drag-out about what he could and could not do with water. Kristen, the speech therapist, had told him on numerous occasions that he could not drink water unless his mouth was clean. Drinking water immediately after eating was strictly forbidden—at least for now. I reminded him that by March 1st I would be out of here, even if he gave himself pneumonia again by aspirating on food particles.
Mom and I were still concerned about Dad’s dry weight and followed his bus to the dialysis center so that we could talk with his nurse about the amount of fluid they had been removing. We had spoken with Sue, our friend and nurse practitioner, only a week ago, but I still thought that they were removing too much. After speaking with the charge nurse, she said that they would remove only the minimal amount—1200 ml. Mom and I had been loaded for bear, and the encounter with the nurse was very anticlimactic.
On the way home from the dialysis center, Mom and I stopped at HEB. I preferred shopping during early morning hours when no one was around except the people who restocked the shelves. When we pulled into the parking lot, we noticed the strangest sight—hundreds of blackbirds were sleeping in the parking lot. Dozens of them were on the ground, and many others were sitting on the tops of the employees’ cars. As we drove through the parking lot, they didn’t stir. They remained still as we walked passed them and into the store. By the time that we left the store, the birds were gone.
Stan arrived from Houston at noon. He hadn’t been in the house for more than two minutes where we heard the HOP bus arrive with Dad and Dianne. Dianne reported that Dad had weighed in at 66.2 kg, and true to her word, the nurse had removed only 1190 ml of fluid, leaving Dad weighing 65.4 kg.
After lunch, Mom and I ran a couple of errands, and when we returned, Stan and Dad were playing cribbage. After beating Stan at a couple of games, Dad finally wanted to take a nap. He told Dianne that he wanted to get up by 5:00 P.M., a little less than two hours from now. She tried to wake him at 4:45 P.M. and then again 45 minutes later. She was finally able to rouse him at 5:50 P.M., but he stated that he didn’t feel right. He joined us in the living room as we were ending our happy hour. Dianne prepared some shaved ice for him, and during the remainder of our happy hour, Dad talked a lot about his mother and her final days battling Guillan Barre Syndrome.
We had a nice dinner, but Dad didn’t eat much. At Dad’s request, we played a longer game of Oh Hell and didn’t start heading toward bed until 8:45 P.M. After Dad got into bed, Dianne left the room to get ready for bed. She was gone for only a couple of minutes when Dad started complaining about not feeling well and about having the G-tube. As I was administering his meds into the G-tube, he started vomiting, and this time he was vomiting a lot more than mucus.
By the time that Dianne returned, Dad said that he was feeling better. To ensure that his night was less eventful, I also administered some Zofran into his G-tube. He seemed to be coughing a lot, so we had him move up in the bed, and I raised his head and feet. By 9:30 P.M., he seemed better and ready to go to sleep. I was certainly good and ready to go to bed.
January 24. I got up shortly before 6:30 A.M. and went downstairs to see Dad. I had heard through the monitor that he and Dianne were awake and he was asking her if he was tied up (his reference to being attached to the tube feed). He was feeling good, but he was somewhat grumpy and a little sarcastic. While he and I were exchanging barbs, Dianne left the room to take a shower and get dressed. When she returned, I went to my home office to see if I could make any progress with my loaner PC, which had arrived yesterday from my Houston office.
We all had a nice breakfast together. Mom fixed scrambled eggs, sausage, and English muffins, and Dad had a little of each. While Mom and I attended church, Stan and Dad played cribbage. After lunch, Stan and Dad went out to the garden. They spent about 30 minutes outside and then sat on the patio for about 20 minutes, just enjoying the beautiful weather and each other’s company. Stan was Dad’s welcome relief from being surrounded by a bunch of women who seemed to do nothing but tell him what he could and could not do. By the time that the guys came indoors, it was after 3:00 P.M. and time for Stan to return to Houston.
After Stan left, the four of us watched the Denver Broncos beat the New England Patriots. My parents were diehard fans of the Denver Broncos and were thrilled at their victory over the Patriots. We monitored the game between the Carolina Panthers and Phoenix Cardinals during dinner and our game of Oh Hell. Dianne was a fan of the Panthers, so everyone in the house seemed pleased with the outcomes of the sporting events.
We wrapped up our game of Oh Hell by 8:30 P.M., and by 9:15 P.M., all of were ready for bed. Before drifting off to sleep, I called Stan. He had texted me when he arrived home, but I needed to speak with him every night before I went to sleep.
January 25. I was up by 3:30 A.M. and at work with a cup of hot coffee within 15 minutes. The house was very quiet for the next 2-1/2 hours. I kept the office door closed, but by 6:00 A.M., I heard some sounds coming from Dad’s room. Dianne unhooked him from the tube feed, and Dad got up and got dressed for the day. He wheeled himself into the kitchen and prepared himself a cup of hot water while Mom prepared his Cream of Wheat and ½ pear for breakfast.
While I was working, Dad and Dianne walked around the backyard for about an hour, which gave his legs a good workout.
Brenda arrived around 11:30 A.M. for Dad’s physical therapy session, and she concentrated on his balance, which would be important when he started walking with a cane.
Kristen arrived at 2:00 P.M. for Dad’s swallow therapy session. During this visit, she had Mom prepare a cup of hot coffee for Dad and had him take some sips of it. Once an avid coffee drinker, he now was not very enamored with the taste of coffee. It’s amazing how not eating for a few months can affect your taste buds. Kristen said that as long as he had a clean mouth and remembered to tuck his chin when he swallowed, she felt good about him drinking coffee. She added that on her next visit they would have thin liquids and a snack. Kristen left after only 30 minutes, at which time Dad decided to take a short nap.
In addition to Dad’s normal Monday activities and appointments, today was recertification and assessment day for Dad’s therapies. At 3:00 P.M., Kathleen arrived with Pam, the physical therapy shower aide, in tow. Kathleen reviewed Dad’s balance, walking with the walker, and his ability to transfer into and out of the car. She also had Pam work with me to ensure that I could properly apply the dressing to Dad’s port before he showered. Our aides were both trained, but their time with us was coming to a close, and Mom and I also needed this training. At the end of her time with us, Kathleen certified Dad for another 30 days of occupational and physical therapy. She said that he had great balance and that she would like to see Dad walking independently with a cane at the end of 30 days.
After Kathleen and Pam left, I returned to work until happy hour, and Dad took a nap. After dinner and happy hour, Mom beat us at Oh Hell. It was an early evening, and Dad was in bed by 8:00 P.M. I couldn’t wait to call Stan and give him the good news about today’s events.