June 28, 2015. Mom and I arrived at the Scott &White Continuing Care Hospital (CCH) at 9:05 A.M. Dad was still sleeping. We woke him and had Rebecca, the nurse, replace his speaking valve. As soon as he could talk, Dad started complaining about being awakened during the night for breathing treatments. When Dr. White stopped by, Dad complained again about being awakened, and Dr. White changed Dad’s orders so that he would not be awakened during the night for breathing treatments unless absolutely necessary. Today is Dr. White’s last day here for a month or so. Although we liked him, we hoped that we wouldn’t be around to see him again.

Although the doctor called Dad’s coughs productive, they exhausted him. By the end of the day, he was wiped out and was dreading dialysis tomorrow.

Dr. Michael Anderson started his week-long rotation on Monday, June 29. We hadn’t heard anything about him, but he rubbed Mom the wrong way right off the bat. We had become accustomed to having doctors talk with us, and Dr. Anderson wasn’t really interested in talking with the family.

During this first full week at the CCH, Dad had his first visit from Adan, the speech therapist. The plan was to meet with Dad once a week and then have another MBSS around the middle of the month. We weren’t very pleased with the frequency of the therapy sessions because we were so anxious about his inability to swallow without aspirating. Adan did say that Dad could have ice chips after oral care.

Dad was also visited by physical and occupational therapists, but they both had to stop by a couple of times because Dad was too fatigued after dialysis to engage with them. Mom told them both that afternoons after dialysis weren’t good times for Dad to participate in physical therapy because he was too weak. When they were finally able to assess Dad, they both said that he exhibited decreased strength, exercise tolerance, and balance. Physical therapy would start immediately with visits 2-3 times per week. Occupational therapy would start after he built up some tolerance to activity. They said that his prognosis was fair.

We kept hoping that he’d advance from the speaking valve to a red cap. The red cap plugs the proximal end of the tracheostomy tube. I like to think of it as training wheels for decannulation (removal of the trach tube). The doctor said that Dad still had too many secretions for them consider red-capping him. With the way he was coughing, I couldn’t disagree.

Although the respiratory therapists stopped visiting Dad during the night, the nurses didn’t stop their visits every two hours to reposition him. He complained about it several times a day, but the repositioning was necessary to promote wound healing. The wound from his fall in May had not healed, and lying on it all day and night slowed healing.

Dad seemed to be making slow progress, but with the exception of his assessment from physical therapy, he had not been out of bed. When he was at Memorial, the doctors were practically militant about him getting out of bed and into the chair, and Mom and I could not understand why the doctor here didn’t get him out of bed.

Dad was also visited by an infectious diseases specialist. He’d been on several antibiotics during the past 55 days. His WBC count was within normal limits, but they were going to continue the current course of treatment as long as they could detect patchy areas of fluid in his lungs.

Dialysis days really drained him—literally. During dialysis, they removed a minimum of four liters of fluid during each session. We had heard that these sessions would be four hours, but his sessions during this week were five hours. His extremities didn’t seem swollen, so we lay people thought that the quantity bordered on excessive. The doctor usually described Dad’s mental state as lethargic on those days. One day after dialysis, he told my mother that he didn’t think that he’d survive this ordeal. In addition to being his patient advocates, Mom and I also had to act as his cheer-leading squad to bolster his spirits, which was often the most difficult job. As serious as Dad’s health issues were, Mom was still recovering from her own health challenges.

July 2 was a pretty good day. During morning rounds, Dad told Dr. Anderson that he felt reasonably well, but repeated that dialysis was a “tough slog.” Dad was visited by a couple of physical therapists, and he exhibited some of his real personality. He laughed and joked with them during the PT session and was able to perform all activities. They observed that his mobility had improved and he was able to stand briefly.

Dad also got a shave and a mani-pedi, courtesy of Wound Care. I don’t know who was more pleased—Mom or Dad. Following the sprucing, they also pronounced his chest scar to be “beautiful.“

I had spent most of the week at home in Houston, but my husband and I were off from work on Friday, July 3, in observance of the Fourth of July holiday.  When Stan and I arrived at the hospital at 1:25 P.M., Dad was back from dialysis, but he was totally wiped out. After about 15 minutes of disoriented chit-chat, we convinced him to take a nap. His WBC count was up just slightly from Wednesday, and Dad told the doctor that he thought that his pneumonia was getting worse.

When you’re in the hospital, it’s difficult to get any real sleep. During his nap. his nurse woke him to give him a heparin shot (in the stomach). Soon thereafter, Victor, a respiratory therapist, woke Dad so that he could administer a breathing treatment.

One of our church friends, Sandra, stopped by and brought Dad a small flag for his room. One difference between this ICU-ish facility and the ICU at Memorial was the policy about flowers. Flowers were not allowed in ICU rooms, but they were allowed here. I had sent Dad an arrangement a few days earlier, and with the flag from Sandra in the center, it looked very festive.

Very much like Memorial, the CCH is over air conditioned. I kept a sweater in Dad’s room to ensure that I would never have to suffer from the cold. By the time we left at 4:45 P.M., Mom was beginning to suffer from laryngitis. During Dad’s stay in the hospital, she developed a cough that wouldn’t abate.

July 4. I arrived at 9:00 A.M. Dad was awake and had just had his trach tube replaced. He was really having a tough time with his congestion after the change. Dad wasn’t able to wash his face in the morning, so whenever I was in his room in the morning, I’d wipe his eyes with a cool, damp wash cloth.  Dad and I visited until I left for lunch.

Mom and I returned to the hospital at 1:30 P.M. and were told that Dad still had too many secretions for the doctor to consider red-capping his trach tube. Around mid-afternoon, Michelle, the nurse, gave Dad a shot of heparin in the stomach. She also tried to fix dangling ends on his bridled feeding tube. Since he started on the feeding tube, he had pulled it out several times—often in his sleep. Recently, they had started using a bridled feeding tube, which reduces pullouts.

Later that afternoon, Earl and Marilyn, two of my parents’ good friends, stopped by for a short visit. Before he entered the hospital on May 6, Dad had proclaimed that he didn’t want any visitors while in the hospital. At the time, we thought his hospital stay wouldn’t exceed 10 days. It was now day 60, and we were relaxing his stated visitation guidelines.

After his visitors left, the respiratory therapist administered another breathing treatment. Shortly thereafter, Dad said that he was getting sleepy and suggested that Mom and I leave for the day.

Another holiday celebrated in the hospital. So far we had observed Mother’s Day, my birthday, Father’s Day, and now Independence Day in the hospital. He probably wouldn’t be released by Stan’s birthday on July 22, but it would be nice if he could eat cake by then.