January 5, 2016. I had stayed up too late the night before and Dad had interrupted Michell’s sleep, so she and I were both moving slowly this morning. I took a short break from work, and Michell and I woke Dad at 4:10 A.M. With a little assistance from Michell, Dad was up, dressed, and ready for his Cream of Wheat and peach slices by 5:00 A.M. It was fortunate that he was ready early because the HOP bus arrived at 5:45 A.M., which was on the early side of their pickup time window. It was a danged cold day winter day in central Texas, and I was glad that I had to attend a meeting and could not escort Dad and Michell out to the bus.
During Dad’s dialysis session, 1,200 ml of fluid was removed, which was much less than most sessions. When Dad and Michell arrived home at 12:15 P.M., he announced that he was going to walk after lunch. The four of us ate a light lunch and I served Dad a small amount of mac-and-cheese and fig jam. Dad said that he would like to take a short nap and get up at 1:30 P.M. As soon as he transferred from his wheelchair to the bed, I administered his final dose of antibiotic for his second bout of CDiff. Unfortunately, within a few minutes he started vomiting. I had assumed that because I had given him the pill on a full stomach I didn’t need to also give him a Zofran pill, but I was wrong. At least we were finally finished with this course of medicine. Because of this little interruption in his plan, Dad decided to postpone his walk until 2:00 P.M.
When Dad woke from his nap, Michell got Dad’s walker, but as soon as he started to walk, he stumbled. After walking tentatively for about 10 minutes, Dad decided that he was too tired to continue. He was very upset that he felt so weak and winded after just a few minutes, and he asked to lie down on the bed for a few minutes.
When Dad woke up at 3:45 P.M., he complained about itchiness, so Michell gave him a sponge bath and changed his bed linens. After Michell encouraged him to exercise more, he agreed and said that he was now ready for some walking.
We had a very nice happy hour, and then we had leftovers for dinner. I still tucked my chin when he swallowed, as if I could will him to practice the correct swallowing techniques. We got a late start on cards, and Mom eventually won. By 8:00 P.M., Michell and I accompanied Dad to his bedroom, and I administered another breathing treatment before he went to bed. I could not believe how much his oxygen saturation had improved since his trach was red capped. When I checked his oxygen saturation tonight, it was 99%, which was higher than it had been since he had come home. After administering his trach care, I must not have replaced the red cap securely. Before I left his room, he coughed, which propelled the red cap across the room. Fortunately, I had a spare that I could use.
At 11:00 P.M., I heard Dad calling for Melissa, which is what he usually called Michell. He had been stumbling over the aides’ names since he’d been home, and they had gotten to the point that they responded to their aliases. I ran downstairs to see what he needed, and he said that he wanted to know if it was time to get up. Sheesh.
January 6. The downside of having Dad’s trach red capped was that without the noisy oxygen concentrator, I could more clearly hear what was being said in his room and I could hear every squeak of his creaky bed. At 2:00 A.M., he woke up and announced that he was ready to get up. Fortunately, Michell convinced him to stay in bed for a couple of hours longer.
By the time that Dad woke up again at 4:00 A.M., I was logged on to work in the office next to my Dad’s bedroom. While I worked, Michell was able to convince him to run through all of his exercises. Michell departed shortly before 10:30 A.M., just after Dianne arrived at 10:00 A.M. Michell had been gone for about five minutes when she reappeared back in the house because her car had a flat tire. I belonged to AAA-Texas and called for roadside assistance in our driveway.
While she waited for more than an hour for aid to arrive, Michell ate lunch with us. Dad ate ½ cup of bluish banana. I was pretty sure Dad couldn’t wait until I quit adding blue and green food coloring to his food. It really did make the food look disgusting.
After lunch, Dad took a short nap and woke up a few minutes before Kristen arrived for his swallow therapy session at 2:00 P.M. Today was another milestone and a fun day with Kristen. Once again, Dad wanted to review the list of foods that he could eat and see what he could add. When he asked about ice cream, Kristen said that ice cream was fine, and then she asked Mom if we had any ice cream in the house. We did, and Dad enjoyed a small bowl of vanilla ice cream for the remainder of their session.
Moments after Kristen left, Kathleen, the physical therapist, arrived with a physical therapy aide who would help Dad with his shower. It had been almost eight months to the day since his last shower, and was he ever ready. We spent about 30 minutes covering his dialysis ports, using some shower shields and tape that we had purchased, based on recommendations from Sue, Dad’s dialysis nurse practitioner. Although my parents have a large bathroom and shower, both were a little crowded. Dad, Dianne, and the physical therapy aide were all in the shower. Kathleen orchestrated the process from outside the shower and Mom stood by with towels. After helping to cover his dialysis ports, I returned to work in the next room. It seemed like only a couple of minutes later that the physical therapy aide noticed some condensation buildup under the shower shield, and I heard her end the shower. Dad was far from squeaky clean, but I’m pretty sure that he lost at least a couple of layers of dead skin. When Dianne tried to apply some lotion, Dad balked at having anything put on his skin.
During dinner, we all ate meatloaf, green beans, and ice cream, including Dad. I worried over every bite that he took and I don’t know how I avoided heartburn. In addition to tucking his chin when swallowing, Kristen had insisted that Dad not talk while eating. As a kid, I remember hearing that we should not talk while eating, but most people are pretty bad at following this guideline. For Dad, it was especially important, and we were having a difficult time getting him to remember. I encouraged everyone at the table to eat in relative silence.
We had an early game of cards and Dad was in bed before 8:00 P.M., and I hoped that he would stay in bed throughout the night. About 30 minutes later, Dad woke up, complaining of itching, and he let Dianne apply some lotion to his back.
January 7. Now that the bedroom was quiet, Dianne was more sensitive to the annoying alarm on the Kangaroo pump when it ran out of Nepro. It woke her at 2:15 A.M., and Dad woke up while she was replenishing the empty bag, but only for a few moments.
When I woke up a little after 3:30 A.M., I couldn’t hear sound from the baby monitor. A couple of minutes later, I heard the bed creak and Dianne told Dad that he could not get up until 4:00 A.M. She was short, but she could be forceful.
After Dad got out of bed, his morning routine went like clockwork, and the bus left with him onboard at 6:00 A.M. I had meetings all morning and was on the phone when Dad and Dianne returned home at 11:25 A.M.
During dialysis, they removed 2,100 ml of fluid, and Dad was a little tired and wanted to take a little nap before lunch. Mom had to leave for a haircut before Dad woke up at noon, but he ate lunch with Diane and me.
After lunch, Dad was ready for another nap. While she was sitting in the side chair in Dad’s room, Dianne also fell asleep. While they napped, I went to the pharmacy to pick up a prescription for Dad. After Dad and Dianne were up from their naps, Becky, the owner of One on One Personal Care, stopped by for a visit. Becky said that Gale still didn’t know what she wanted to do. She said that Dad looked great, and then she left. We had happy hour at 5:00 P.M., followed by sloppy joes and ice cream for dinner. Dad seemed to cough a bit more this evening, which concerned me, which wasn’t surprising.
I won at cards and by 8:15 P.M., I had administered his nighttime meds and breathing treatment, and I was turning out the lights. His breathing had seemed a bit labored, but his oxygen saturation still registered 96%.
He woke up a couple of times during the night to clear his secretions, but was able to return to sleep.
Today was the 100th day since Dad’s discharge from the CCH and on home care.
January 8. I had been working for almost two hours when Dad woke up at 5:30 A.M. Shortly after he got out of bed he proclaimed that he was finished with using the bedside commode. Instead, he would start using the “proper toilet,” which was located inside a toilet room. After 100 days at home with Dad, I decided that instead of stating the obvious, that he wasn’t strong enough to use the toilet, I said that we would let him see if he could maneuver himself on and off of it before he needed it. If nothing else, we could speak with the physical therapist about this new goal. I guess I shouldn’t have been too surprised that he was fed up with the bedside commode. During most of his 148 days in the hospitals, his primary goal had been to use the toilet in the bathroom. There were so many daily activities that we take for granted that he had not been able to do. He had made some great strides, but as he slowly regained his health and strength, he was becoming more impatient to resume his previous life.
In addition to the usual Friday visits, the observance of the holidays had caused some reswizzling of schedules, so Dad would see his nurse and all of his therapists today. The nurse came by first this morning, followed shortly by Brenda. While Brenda was here for Dad’s physical therapy session, I told her of Dad’s desire to use the toilet, and she agreed to be present while he tried. He was able to sit on the commode, but could not get up. Brenda repeated an earlier suggestion to install grab bars in the bathroom, and this time, Dad seemed to seriously consider her suggestion. Following the toilet practice session, Brenda put him through the paces.
Shortly after Brenda left, Janet arrived for Dad’s occupational therapy session. During his therapy session, Mom and I ate lunch. I left shortly after 12:30 P.M. for the dialysis center to see Susan, the dietitian. She and I agreed that Dad needed to consume at least 2400 calories per day to gain the weight he needed and to meet his nutritional requirements. Shortly after I returned home at 2:00 P.M., Kristen arrived for Dad’s swallow therapy. During his session with Kristen, Dad asked if he could have bread. Instead of directly answering his question, she asked Mom if she would prepare him half of a turkey sandwich. He nibbled on the sandwich and had all but consumed it by the end of their session. Although she said that Dad could eat bread, Kristen did not want him to eat toast, because of crumbs that he might aspirate.
I enjoy making pizza from scratch, and during our happy hour, I prepared a pizza for dinner. To my surprise, the guy who just a few days earlier had refused to eat more than 1/8 cup of food at any meal, ate 1/8 pizza. And just three hours earlier, he had consumed a small turkey sandwich.
After our pizza dinner, we played cards and Dad won, beating Mom by one point. Dianne and I administered his nighttime meds and breathing treatment and had him ready for bed by 8:20 P.M.
After I went to bed, Dad had another night of itching. Through the baby monitor, I could hear him coughing, and shortly after 10:00 P.M. I went downstairs and convinced him to use his Yankauer suction wand to handle his own secretions. His swallowing and eating seemed to be improving, but I couldn’t help but worry that he might aspirate or might have already aspirated.
I wished Dad would adhere to a few of Kristen’s guidelines so that I wouldn’t worry so much. I feared that all this worrying would make my hair turn gray.