Recovery seems to be going from bad to worse

September 5, 2018. Mom and I arrived at Dad’s room at 7:45 A.M., hoping that we’d find that his condition had improved overnight. Typically, nighttime was not Dad’s friend, but I never stopped hoping that history would stop repeating itself. The room was still dark and Dad was sleeping, so I opened the blinds to let in some sunlight and wake Dad—I was ever hopeful. The light had no effect on him, but when Mom and I spoke to him, his eyes fluttered open and he grunted unintelligible responses to our questions.

bad2worseRedRoosterAs crazy as it might sound, during the past four months, “She’ll Be Coming Round the Mountain” had become something akin to our family song. In an attempt to elicit some meaningful response from him, I sang all of the verses, but he still didn’t open his eyes. A couple of times he sort of laughed while I was singing, but it was as if he was laughing at some private joke that only he could hear. I felt powerless and frustrated, and I didn’t know what to do.

Richard, Dad’s nurse, entered the room at 8:15 A.M. I asked him about Dad’s morning meds, and he said that Dad still had a couple of meds that had to be administered orally. Richard and I decided that we’d try mixing the aspirin and Midodrine pills in some pudding and that I would try to get him to eat it, but I didn’t know how successful I’d be. Before he left the room, I asked Richard if he had seen anyone from nephrology this morning, and he said that he hadn’t. After seeing how Dad’s condition had deteriorated yesterday after dialysis, I was anxious to see what they now had planned for Dad.

At 8:30 A.M., Dr. Harris, the neurology resident, stopped by. Once again, we reviewed Dad’s history. He offered a couple of suggestions about what might be causing Dad’s mentation challenges, but nothing new and nothing that sounded reasonable to me. As a matter of fact, Dad had had all these conditions before he had improved just a couple of days ago. Dr. Harris said that he would come back later with Dr. Rasmussen, the attending neurologist.

bad2worseRoosterAt 8:45 A.M., Leslie from PT stopped by. I updated her on Dad’s condition. While she was there, Dad mumbled something about killing the rooster. I explained that I had been singing “She’ll Be Coming ‘Round the Mountain,” which has a verse about killing the old red rooster, and she said that perhaps I needed to sing better songs. She then proceeded to sing the first verse of “You Are My Sunshine.” She had a sweet voice and the look on his face and the intense way that Dad looked at her reminded me of the way his mother looked at her nurse a couple of days before she died in 1986. I’m ashamed to admit it, but I was jealous. I had expended all of my energy trying to get a response from the person who was so much like me, and Leslie seemed to succeed where I had failed. When she finished singing, Leslie was able to get Dad to sit on the side of the bed, but he wasn’t very steady and could not sit without support. By 9:20 A.M., she was finished and I had been able to administer Dad’s morning meds with pudding.

A few minutes after Leslie left, Richard tried without success to take Dad’s temperature using an oral thermometer in Dad’s mouth and under his arm. Using an oral thermometer requires a bit of cooperation from the patient, and Dad was not able to keep his mouth closed or hold his arm close to his body long enough to obtain a valid reading. Richard left the room saying that he would try again later.

bad2worseFlower2At 9:50 A.M. Dad was visited by Audrey, a PA with cardiac electrophysiology. She said that Dad had a 2:1 condition that was usually remedied with a pacemaker. While she was in the room, I asked her if she could access Dad’s lab results. She had access to Dad’s chart and she told me that his WBC count yesterday was 15 and was down to 14 today, which was promising news.

Our friend and my parents’ neighbor, Sharon, stopped by around 11:00 A.M. and stayed for over an hour. Usually, her presence seemed to have a positive effect on Dad, but today he slept through her stay. Mom and I were grateful for her company.

fabCrummyCross2Shortly after Sharon left, Dr. Duran stopped by with her entourage of nephrology fellows and residents. She said that Dad could not tolerate dialysis, which was obvious by the way that Dad’s condition deteriorated after dialysis yesterday. She also said that his kidneys would continue to worsen on diuretics. I told her that it seemed that he was damned if he had dialysis and damned if he didn’t. She agreed that he was in a bad place. Obviously, he would not be having dialysis today, and she said that they would stop by tomorrow.

Dad’s lunch was delivered at noon, and a couple of moments later, Rachel, the dietitian, arrived to see how Dad was doing with some of his dietary changes. I told her that I had appreciated the thickened liquids with rice. Today’s tray was a good example of the positive dietary changes. His tray contained some brown rice and a bowl of puréed lentil soup. After I combined the rice with the soup, I was able to wake Dad and feed him the entire bowl of the mixture.

I felt better because Dad had eaten a good lunch, so Mom and I left the hospital at 12:25 P.M. for our lunch at home. We returned to Dad’s room at 2:00 P.M. Dad was still in a strange place mentally and spent much of the afternoon talking to himself. Before lunch, he had been talking to us, but we hadn’t understood him.

Today was changeover day for the attending physicians. Typically, we didn’t see the new doctor until the afternoon of the first day. Mom and I hoped that we hadn’t missed seeing the new attending physician or the neurologist while we were gone.

anotherBadCross3At 3:00 P.M., Dr. Ashley Thomas, the new attending physician, entered Dad’s room. She attributed Dad’s mentation problems to delirium and said that there was an outside chance that the antibiotic that Dad had received earlier was causing the delirium. Evidently, it can cause problems in about 2% of the population. They had since changed to a different antibiotic. I told her that Dad had had delirium before, and this didn’t seem like delirium to me. Plus, he had been doing well and the change seemed very sudden to me. She asserted that patients could experience delirium suddenly, but I was not convinced. When I asked her about Dad’s future and whether she envisioned him going to a place like the Scott & White Continuing Care Hospital (CCH) or the Meridian, she said that she didn’t know whether the Meridian could care for him and that someplace like the CCH would be better. When I told her that we had not had good experiences with the CCH, she said that we had other options, which further exasperated me. The closest continuing care hospital was approximately 40 miles from here, which wasn’t an option for us. I hadn’t been happy with this visit and was glad when the doctor left the room.

At 3:30 P.M., the respiratory therapist came by to check on Dad’s oxygen saturation, which was now at 100%. Because she thought that he was doing better, she decided to reduce his oxygen flow from 4 to 2 liters.

At 4:00 P.M., Richard came in to change Dad’s gown and reposition him in the bed. For the next couple of hours, we tried with little success to get Dad to engage with us, but he spent most of the day sleeping. When he did try to respond to us, we couldn’t understand him.

I never liked to leave for home before Dad’s dinner tray arrived, and today it didn’t arrive until 6:30 P.M. I couldn’t get him to eat much and his breathing seemed pretty labored, but I fed him the broth from one bowl of the chicken noodle soup.

bad2worseConeBefore Mom and I left his room, we noticed that Dad was totally engrossed in eating an unseen ice cream cone. His eyes were closed and he seemed happy as he carefully and methodically licked the ice cream from the cone. It was one of those moments that made you want to laugh and cry at the same time. I wished that he could have been as involved with us as he was with that ice cream.

I couldn’t find a nurse or aide, so I left a note on Dad’s bedside tray that informed the staff of his current status and our departure, and Mom and I left for home shortly before 7:00 P.M.

 

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