July 5. On the way to church, Mom and I stopped by the hospital to visit with Dad and to try to get a moment of the good doctor’s time. Dr. Anderson didn’t seem to be a fan of the patients’ families, but we had told the nurse yesterday that we wanted to talk with him. Before the doctor graced us with his presence, Mom and I had a discussion with Dad about his inactivity. He seemed content to stay in bed, and we were just as determined to get him out of it.
When Dr. Anderson arrived, he remained in the threshold with his arms crossed high on his chest. Following the introductions, I asked him about Dad’s prognosis for getting a red cap on his trach. He said that they were monitoring Dad’s secretions and would attempt it as soon as possible. The conversation started to deteriorate when I asked him about Dad getting out of the bed and into the chair. He said that Dad was too weak to sit in the chair. When I challenged that proclamation, saying that all the doctors at Memorial wanted Dad in the chair every day, he still wouldn’t budge. He basically said that the Memorial doctors were wrong. When I asked about the frequency of Dad’s swallow therapy, he rolled his eyes and said that the (lemon swab) therapy that Dad had received at Memorial wouldn’t do any good. To make matters worse, Dad was satisfied that he didn’t have to get out of bed. The first word that popped into my head was warehousing, and Mom and I were incensed. They were not going to warehouse Dad.
While Mom and I were at church, many former and current health-care professionals asked us about Dad’s condition, and they all asked if he had been sitting in the chair. When we relayed our earlier conversation with Dr. Anderson, one of the parishioners encouraged us to put our concerns in writing and meet with the nurse manager and request a care plan for Dad. During the morning service, Pastor Don mentioned that Dad was one of his blessings. Don went on to say that Dad had been having a tough time, but he blessed Don every time Don visited with him. On the way back to my parents’ home after church, I stopped by the hospital to say goodbye to Dad before I went home to Houston. Before I left, I collected some information for Mom about the CCH from the CCH website. I wanted to ensure that she was adequately prepared for her meeting with the nurse manager. I also ensured that she was armed with an excerpt from the mission statement on their website.
July 6. Shortly after Mom arrived at the CCH, the case manager informed Mom that Dad would need to remain at the CCH until he had received dialysis for at least 90 days. Evidently, Medicare won’t consider a person dialysis-dependent until he has received at least 90 days of dialysis while hospitalized. What that really means is that they won’t pay for it. It also meant he couldn’t leave this place until August 26! It was difficult to believe that this policy was cost efficient, but who am I to question the U.S. government?
It was the first day of the doctor rotation, and a breath of fresh air, known as Dr. Randall Smith, blew into Dad’s room after dialysis. In addition to insisting that Dad get out of bed and into the chair, he actually spoke to Mom. A few people at the CCH would become important in our lives. Now that Dr. Smith had arrived, we had met three of them: Adan, Angela, and Dr. Smith.
Later that morning, Mom was able to see April Jones, the nurse manager. We don’t know if seeing her or having a different doctor made the difference in Dad’s care that week, but Mom’s mood improved significantly after their visit. We still can’t tell you what a care plan looks like, because we never saw one. Evidently, care plans are prepared every week and are part of the patient’s chart. Patients and their families are apprised on a need-to-know basis, or when something happens. We learned that our best bet was to form relationships with the therapists.
Adan, the speech therapist, visited with Dad and administered a bedside swallow test with water, ice chips, and lemon swabs. He also felt Dad’s neck muscles, and believed that Dad was swallowing. Instead of the original plan of one time a week, Adan would now try to meet with Dad three times each week. Although Dad’s progress was slow, Adan thought that he was progressing toward his goals.
Dad had dialysis today, but they removed only 2.8 liters, which was less than what they had been removing. His WBC count was inching down and was now at 8.5—another good sign of progress.
July 7. Dad started the day somewhat agitated and confused, but his mental status improved as the day progressed. When Jennifer from physical therapy arrived, Dad told her that he was “as weak as a kitten.” Following their session, Jennifer said that Dad’s strength was improving faster than he appeared to realize. She thought that he was making good progress with his transfers and standing, and that his activity tolerance had also improved. Could it be that all that physical activity improved his mood and mentation?
At the end of the physical therapy session, Jennifer left him in the chair, where he remained for an hour. Although Mom’s mood improved with Dad’s increased physical activity, she became a bit agitated with the “junk and bugs” on the floor. This wasn’t a new complaint. Conditions were pretty similar at Memorial, too.
Adan stopped by today with some thickened cranberry juice for Dad to swallow. Adan was going to see if he could get a MBSS test at Memorial next week. If Dad could pass the test, then he could start eating again.
July 8. It was dialysis day again. The nephrologist thought that Dad looked euvolemic—or normal—so they would not need to remove as much fluid. However, because he became hypotensive during dialysis, they had to stop fluid removal. In the end, they removed less than 2 liters.
We also received mixed news about his lab results. Although his WBC count was down to 7.7 and his hemoglobin was staying put at 8.5, his creatinine levels still exceeded 4.0—significantly higher than normal range of 0.6—1.2.
One of the daily routines occurred between the nurse (every nurse) and my Dad. Every day, multiple times each day, my father complained about being repositioned in the bed. This interruption occurred every two hours that he remained in bed (another good reason to get in the chair). Every time that my father complained, the nurse recited the importance of turns to prevent skin breakdown. He could be a challenge sometimes.
July 9. Dr. Smith said that in terms of his respiratory status, Dad was doing well. Unfortunately, he still had too many secretions to have his trach tube red-capped. He also said that, although it was still elevated, Dad’s creatinine levels seemed to be dropping. He wasn’t going to make any predictions but thought that Dad might be having some recovery of his kidney function. Wouldn’t that be great!
Jennifer from physical therapy was pretty optimistic, too. She noted that Dad was able to pull himself up and reposition himself in bed with little or no assistance. Mom was pretty excited about Dad’s physical therapy session. He walked in the hall that day with the assistance of a walker. Following therapy, he sat in the chair again for an hour. Dad’s swallow therapy was progressing too, albeit much slower.
Following an afternoon of flying endorphins from all of Dad’s physical activity, their friend, Marilyn, stopped by for a short visit. When Mom got home that evening, she picked some cantaloupes and tomatoes from my parents’ killer garden. Dad had missed the garden-fresh cucumbers; maybe he’d be home in time to enjoy fresh-picked melons from their garden.
July 10. It was Friday, and dialysis day. The lab results were encouraging. All of his levels had improved since Wednesday. His hemoglobin was up, his WBC count was down to 7.4, and his creatinine finally fell below 4.0. I arrived from Houston shortly after 3:30 P.M. After a week of good news, I was eager to see him again. Unfortunately, he was still pretty tired and disoriented from his dialysis session. At 4:15 P.M., he asked us to leave for the day.
Mom and I decided to take advantage of our free time and worked in the garden. We picked about three dozen figs; I picked 13 tomatoes, five cantaloupes, and one cucumber. I thought that I had pulled up all the cucumber plants, but one escaped me and the cucumber was about the size of a melon.
July 11. Mom and I arrived at the CCH at 9:25 A.M., in time to see a whirlwind of activity around Dad. Evidently, his feeding tube was clogged again and the nurse’s aide was trying to clear it. When Dr. Smith arrived, the small room seemed filled to capacity. In addition to some of the typical daily goals, like the requirement to get out of bed and into the chair, he announced that he wanted to see if they could remove Dad’s central line. Central lines and dialysis catheters are like infection highways with exits into your heart and brain, among other vital organs. The doctor thought that Dad was improving to the point that he could have the central line removed and replaced with an IV for the administration of his meds. I had some mixed feelings about this. IVs don’t stay in for long periods, which meant more sticks, and he was a poor stickee. I inhaled, but kept my thoughts to myself. I didn’t know what Dad thought, but I inherited his challenging veins and wondered if we shared similar anxious thoughts. The tech was able to hit a vein on the first try, which was practically a miracle.
Although Dad’s creatinine levels were improving, his kidneys weren’t giving up nearly enough fluid. In a two-day period, they needed to release about 2 liters. What they didn’t give up was pulled off during dialysis. If only you could give your kidneys a pep talk.
Dr. Smith thought that Dad was still a few days away from having his trach tube red-capped. Dad still had some infection in his lungs and he was still coughing up a lot of secretions. Later in the day, the respiratory therapist suggested that Dad might get his red cap on Monday or Tuesday.
When Mom and I returned after lunch, Dad had a new feeding tube, but it was somewhat uncomfortable. The tube has a very small diameter and is very flexible. It contains a thin wire to aid insertion and which appears on x-rays, which in turn are used to ensure that the tube is properly positioned. After the doctor finally had had the opportunity to review the x-ray of the positioning of Dad’s new tube, the nurse removed the wire, which improved the comfort level. Then the nurse restarted the Nepro tube feed.
As sick as Dad still was, the little things seemed to really annoy him, which I guess I should have taken as a good sign. He absolutely detested the oral care treatments that he received several times during the day. He thought that the mouthwash was the vilest thing he had ever tasted and asked the respiratory therapist, “which gas station they visited to find that stuff.” Considering that he used the original Listerine at home that was really saying something about the taste. His oral care was important, so I didn’t respond to his complaints. I was more concerned when he complained a couple of times that his IV site was painful.
Before Mom and I left for the day, Dad told Mom to be sure to give the neighbors some of our cantaloupes. Mom said that she had planned to give them away and would start with our neighbors to the north after we got home.
Mom was really struggling from the over-cooled building and had me stop on the way home for throat lozenges. We also picked up a birthday card for one of my cousins. My Dad had been mailing birthday cards to his nieces, nephews, and their children. As the last of his generation, he wanted to maintain the connection with the younger generation of Lockes. Mom and I hoped that he’d be home in time to sign and mail the October birthday cards.