Recovery failed

September 6, 2018. Yesterday had been a tough day for Dad, and Mom and I were a little anxious when we arrived at his room at 7:50 A.M. As we expected, Dad was sleeping. We noticed that his chin and pillowcase were soiled, and I couldn’t tell if it was pudding or blood. We chatted briefly with the night nurse and learned that she had used pudding as the delivery medium for Dad’s night meds. I wished that she had taken a couple of moments to wipe away the pudding on his face. It was now dry and very difficult to remove. She also said that he had had a very large bowel movement last night, which I hoped alleviated his bloated stomach problems that we had noticed yesterday.

bad2worseFlowerDad’s food tray arrived shortly after 8:00 A.M., but I couldn’t feed him until he was more alert and repositioned in the bed. I used Dad’s call button to summon assistance from the nurse or aide (CNA).

At 8:15 A.M., Audrey (the PA) and Dr. Leung from cardiac electrophysiology stopped by. Audrey had visited yesterday and had told us that Dad’s current heart condition was not contributing to his current situation. She had brought Dr. Leung today to confirm yesterday’s assessment.

At 9:00 A.M., Nakita, Dad’s nurse, and her nursing student came in to administer Dad’s morning meds and reposition him in his bed. I had been unable to rouse him and was open to their suggestions. Nakita tried rubbing his chest, which seemed to annoy him but didn’t wake him. Once again, Nakita was unable to get Dad’s temperature.

bad2worseFlower2Right after they finished taking his vitals, Leslie walked in for Dad’s physical therapy session. Mom, Nakita, and I were shocked when Dad said hello in response to Leslie greeting him. Unfortunately, the interaction ended with hello, and Leslie was unable to rouse Dad enough for him to open his eyes. She said that she would try again later today. Having been unable to administer his morning meds or take his temperature, Nakita left the room. Like me, she had been a tad optimistic when Dad seemed to respond to Leslie.

Dr. Ashley Thomas, the attending physician, entered the room at 9:30 A.M. She said that Dad’s WBC count had moved from the 14-15 K range (slightly high) where it had been for the past few days to 32 K, and she suspected that he was septic. In response to his latest labs, she said that they had started him on a different antibiotic and that they were going to also test him for CDiff. When I asked about the diuretics, she said that nephrology wanted to give his kidneys a rest yesterday but that they might start them again today. Before she left the room, the doctor said that she would probably have Dad’s tunneled PICC line redone in case it might be the source of his infection.

bad2worseFlower3The doctor returned to Dad’s room a few minutes later with Nakita and the nursing student in tow. Dad seemed to be in a lot of distress, which the doctor thought might have been caused by a full bladder. She planned to scan his bladder and provide him with relief if that was the case. I asked about nourishment because he hadn’t eaten much since lunch yesterday. She said that she did not want to insert a nasogastric (NG) tube now because Dad had a lot going on at the moment.

After the bladder scan, Nakita wanted to bathe Dad, so Mom and I went to the 6 North waiting room. We were seated for only a moment when my parents’ friend, Sharon, texted me to get an update on Dad’s status. I told her that he had not improved since yesterday and that he seemed a bit worse.

fabCrummyCross2At 10:30 A.M., while Mom and I were sitting in the waiting room, the doctor sat with us and said that Dad’s distress had not been caused by his bladder, which was bad news because the problem could not be easily remedied. She also said that because the antibiotic required to combat CDiff must be administered orally, she had decided to insert the NG tube because Dad was not able to swallow pills. Although she would not know for 24 hours whether he had CDiff, she needed to start treatment now in case he did. She also said that they would give him some morphine to keep him comfortable.

When Mom and I told her that we would be leaving the hospital for lunch, she advised us to eat here. We found this guidance very unsettling, and I texted that information to my parents’ pastor.

fabCrummyCross2Mom and I left Dad’s room while the nurse inserted his NG tube. Around 11:00 A.M., Sharon arrived with a box of cookies and pastries from a local bakery, saying that times like this required sugar. After waiting for what seemed like a long time, I excused myself and peeked into Dad’s room to see if we could return, which was a mistake. As I opened the door slightly, I saw that a couple of nurses were struggling with Dad as he whimpered and tried to push them away. It was a heartbreaking sight that I’ll probably never forget, although I hope that in time I will. I silently closed the door and returned to the waiting room and told Mom that they weren’t yet finished with Dad.

Around 11:30 A.M., Pastor Brian, the associate pastor, entered the 6 North waiting room. The four of us discussed how it was as important to die well as to live well, but Mom wasn’t willing to admit that Dad was dying.

When Pastor Tom joined us shortly after noon, Sharon left. Pastor Tom insisted that Mom and I eat something, but we weren’t hungry. After rejecting the pastors’ offers of food from various local restaurants, we finally settled on yogurt for Mom and hummus for me from the hospital cafeteria. The pastors supplemented our lunch choices with energy bars and candy. Because of Dad’s potentially contagious condition, the nurse suggested that we eat our lunch in the waiting room.

anotherBadCross3A little before 3:00 P.M., our friends Earl and Marilyn arrived. Before we had learned of Dad’s current condition, Marilyn had told us that they wanted to visit Dad. I didn’t ask them to change their plans because they are such good friends, and I thought that Mom would benefit from their company. The doctor sat with the four of us to discuss Dad’s situation. She said that she had already contacted the Medical ICU (MICU) doctor. Because Dad’s blood pressure was dropping, he would need the type of pressors that the MICU could provide. We had a difficult discussion about whether or not to send Dad to the MICU. Mom felt that we should do whatever we could to help him live. I thought about what I believed that Dad would want. I was not convinced that a good outcome was in his future, even with MICU. If the end of Dad’s life was imminent, I wanted to let him go peacefully. I did not want the last hours of his life to be filled with the torture that I knew that he would endure in the MICU. However, Mom was unconvinced, so the doctor encouraged Mom to sit with Dad for a while. Although I knew that I was right, part of me wanted to be convinced that I was wrong.

Shortly before 3:45 P.M., we returned to Dad’s room where we received another update on his condition from Dr. Thomas. In addition to his other challenges, she said that his hemoglobin was now down to 5.8 (13 being normal), which meant that in addition to pressors to raise his blood pressure, he would need a couple of units of blood. As if this news wasn’t bad enough, she said that he was also bleeding from his intestine. As we stood in the center of Dad’s room, I hugged Mom, and we agreed to start comfort care. I told the doctor that our family was very small and very close. We loved this man dearly, and we now felt that we had to let him go. Through her tears, Dr. Thomas said that she thought that we had made the best decision for him.

As soon as we had made our fateful decision, Nakita and Amber, the charge nurse, started removing feeding tubes and oxygen. They also stopped Dad’s antibiotics and other medications. After withdrawing his medications, they began administering pain medicine and medication to slow his internal bleeding. The nurses cleared the room so that we could sit with Dad in private, promising to check in on us occasionally to see if we needed anything. The doctor said that we could use this time to settle any affairs or issues with Dad, but we didn’t have any. We were communicators and always told one another that they were loved. For the most part, we sat in painful silence and held Dad’s hands and kissed his face.

anotherBadCross2At 4:15 P.M. Drs. Autumn Stratton and Michael Janes with palliative care stopped by. They said that with our permission, they would like to move Dad to the palliative care section of the hospital, where the nurses and staff were trained to work with end-of-life patients and their families. Mom and I agreed that it seemed like a good idea. Dr. Stratton said that she would check to see if they had any available rooms. As strange as it might seem, Mom and I didn’t understand the hospital process of dying and asked to speak with one of their social workers to clarify what was expected of the hospital and us. While Drs. Stratton and Janes were still in the room, Linda Parish, the social worker, visited us for a few minutes.

At 4:55 P.M., I told Nakita that we were leaving for a while. She said that they were cleaning a room in ST4. He would be moved soon, and she would call us with a room number when she knew it. The short ride home was difficult. We didn’t know how long Dad had, but we already felt the void that he would leave in our lives. I had been crying and my eyes felt like I had thrown salt in them, and Mom said that she felt the same way. Alternating waves of nausea and emptiness seem to flow over us.

anotherBadCross4After consuming a glass of wine and some mixed nuts, we decided to return to the hospital. We left home about 6:30 P.M. As I was backing out of the garage, Nakita called to tell me that Dad was being transported to room STC 484. We arrived at the STC area just before the 7:00 P.M. shift change. Dad was still on a gurney that was parked outside of his room. He was breathing when he was brought to the room. After he was moved from the gurney to the bed, the nurses introduced themselves and said that they would return in a few minutes. We sat silently for a few minutes. Looking at Dad, his color seemed so different, and then Mom said that it didn’t look like he was breathing. I put my ear to his chest and couldn’t hear his heart. I took off my glasses and held them over his mouth, but he didn’t produce any noticeable fog. I opened the door and caught an aide as he was exiting the room across the hall. I told him that it didn’t seem like Dad was breathing. He ran down the hall to get our nurse and aide. They both listened for a heartbeat but heard nothing. It seems that he must have passed when they moved him from the gurney to the bed. We stayed in his room for another 30 minutes, and as we were leaving, the hospital chaplain intercepted us in the hall. We returned to Dad’s room to discuss how to proceed once we engaged a funeral home. I gave my father a final kiss and hug, Mom said goodbye to her husband of almost 70 years, and we left the hospital. As much as we hated visiting the hospital, it devastated me knowing that we wouldn’t be returning to see Dad.

I felt a hollowness that I had never known before, and I could only imagine how my mother felt losing the love of her life.


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.


Another very bad day of recovery

September 4, 2018. Yesterday had been rather a mixed bag for Dad, and Mom and I were a bit anxious to see him and see how well he fared during the night. I hoped that he had slept through the night and that we would find him as alert as he had been yesterday morning.

anotherBadCross3However, when we arrived at Dad’s room at 7:45 A.M., it was empty. Thinking that something bad had happened to Dad, Mom became very upset. Because his bed was missing, I assumed that he had been transported somewhere for a test. When I found Nakita, Dad’s nurse, she said that he was in dialysis. I began a slow burn. Yesterday, when the physical therapists left, they said that Dad should be able to get out of bed today and sit in a chair. Dialysis this morning would mean that he would not be in any condition to have physical therapy today, so he would not be sitting in the chair, which we so desperately wanted. I had been very clear with the nephrologists that I didn’t want Dad to have dialysis in the morning. Also, Dr. Duran, the attending nephrologist, told us yesterday that they would start Dad on a Monday-Wednesday-Friday dialysis schedule. Today was Tuesday. Evidently, Dr. Tanner, the nephrology resident, had visited Dad’s room at 6:45 A.M., and Dad was taken to dialysis shortly after the shift change, at 7:05 A.M.  I was furious and asked Nakita to page Dr. Tanner and have him come to Dad’s room.

While I was stewing about Dad’s schedule for the day, Nakita shared some information that completely deflated my anger at nephrology and hopeful feelings about Dad’s progress. It seemed that Dad had not had a good night. According to the night nurse, Dad had been very confused and had pulled off all of his bandages. And when Nakita arrived to work this morning, she found Dad’s hospital gown on the floor.

anotherBadCross1Mom was out of her heart medication and I wanted to pick up her prescription from the pharmacy before the hospital parking lot filled up. When we hadn’t heard from the nephrologist by 8:30 A.M., we left the hospital to pick up her Eliquis. As we were leaving, we encountered Dr. Hunt, the attending physician, as he was exiting from a crowded elevator. As we exchanged pleasantries, I expressed my concerns about Dad’s mentation and told the doctor that we were running an errand and would be available to speak with him soon.

During the past week, two of the four elevators in the north tower had been out of order. Today, only one elevator was operational. Needless to say, lines of visitors and employees queued up for long waits. Considering that a wheelchair was often used in the elevator, the number of other passengers was not always as many as expected, contributing to the wait time. According to the hospital personnel who worked on the ground floor and had received the brunt of complaints, they had been complaining to their management about the situation for over a week. I was already in a bad mood, and this minor inconvenience was my tipping point. When Mom and I eventually returned to Dad’s room at 9:00 A.M., I grabbed my phone and initiated the following Twitter exchange with the hospital:

My father has been a patient in the north tower of Baylor Scott & White Hospital in Temple since August 27. At least 2 of the 4 elevators have been out of order the entire time. Thanks @bswhealth_templ

Thank you for sharing, Melody. We have passed your feedback on to the appropriate department for further review.

People are getting pretty annoyed that only one elevator is working. You’re just shy of an angry mob.

Thank you for sharing this feedback with us, Melody. Our Maintenance team is aware and currently working on the elevators. We appreciate your patience.

I don’t know if the Twitter exchange helped, but within a couple of hours, another elevator was back in service.

fabCrummyCross2Dad’s dialysis session ended at 11:00 A.M., and he was back in his room by noon. Unlike his condition a couple of days ago, he was far from alert when he was returned to his room, and I could not rouse him. By 1:15 P.M., his condition had deteriorated. He had not eaten for over 24 hours, and Nakita had not been able to obtain his temperature from his armpit or by mouth, and after she consulted with the doctor, she called for a RAPID. Once again we heard the ominous announcement: Rapid response medical alert; in-patient room 634 North. Within moments, Dad’s room filled with 6 North personnel and some familiar faces, including Gail, the RAPID nurse, whom we had first met on August 23. Dad’s blood pressure was 84/50, and they had to take his temperature with a rectal thermometer, which showed that his temperature was very low. To increase his internal temperature, the doctor ordered a Bier Hugger, but until it arrived, they piled warm blankets on him.

When the room cleared, Dad’s eyes were open. I tried to get him to look at me, but he would only stare to his upper right. I kept trying to get him to engage with me, but I couldn’t get much more than a grunt. I kept telling him to say “Hi Mel,” but he only grunted. I had not seen anyone from the neurology team, and I was very concerned that he could not interact with me.

anotherBadCross4At 2:00 P.M., I went downstairs to the cafeteria to get Mom something to eat. When I returned to Dad’s room, he was under the Bier Hugger. His blood sugar, which had been very low during the RAPID, was now up to 104. While standing next to his bed, I thought that his belly seemed bloated. When I mentioned it to Nakita, she agreed and said that she would speak with the doctor about it. When the nurse left, I tried to get Mom to try the hummus, without much success. She had never had it before and was less than impressed with one of my favorite foods. She was a fan of cookies, and I was able to coax her to eat a chocolate chip oatmeal bar. I could understand how the events of the morning would affect her appetite, but I couldn’t have her getting sick.

At some point, Dad’s RAPID was closed and reopened, but they closed it for good shortly after 2:30 P.M. It was clear to me that his condition was still very fragile. His inability to look at me and respond had rattled me and I was having a difficult time staying strong for Mom.

anotherBadCross3At 2:55 P.M., Dad was transported to the x-ray department for a CT scan of his belly and head. As he was wheeled back into his room 25 minutes later, Leslie from physical therapy stopped by to tell us that a nephrologist had called her this morning to tell her that Dad would be dialyzed today. She had adjusted her schedule so that Dad would be her last patient, but after seeing him now, she said that they would try to see him tomorrow.

At 3:55 P.M., Dr. Hunt stopped by to give us an update on Dad’s condition. He said that Dad’s brain CT scan was normal and that his lactic acid levels were good. In short, all of Dad’s vital signs had significantly improved since this morning. Before he left the room, he reiterated that they would do everything necessary to keep his heart beating, but nothing to restart it. I didn’t think that this discussion was necessary, but the doctor said that he wanted to have this information in advance of any potential problems. He said that he would return when he had the results of the belly CT scan.

At 4:00 P.M., because Dad was not able to take his medications orally, Nakita administered his afternoon medications intravenously.

anotherBadCross2Dr. Hunt returned to let us know that the CT scan of his belly didn’t show anything bad; however, it did show that he was retaining fluid from his liver that was associated with his cirrhosis. The day after his surgery I had been told that his liver enzymes were elevated but I wasn’t aware that he had cirrhosis and asked about the long-term effect of this fluid. He said that at some point, the fluid would need to be removed; however, Dad had too much going on now to think about such a procedure at this time.

After all of the professionals had left the room, I started singing “She’ll Be Coming ‘Round the Mountain” to Dad. It was a song that Mom and I sang when Dad practiced walking at home. Every so often, he would mumble “driving six white horses” or “kill the red rooster.” He was almost unintelligible, but the nurses, Mom, and I could tell what he was saying. Sometimes he made a sound like a little laugh, but it wasn’t in response to anything that we could understand. The person that we loved seemed so very far away.

anotherBadCross4By 5:00 P.M., Mom was exhausted and wanted to go home. We had a simple dinner of sandwiches and baked beans, a meal that would not have sufficed for either one of our husbands. Just as we finished eating, there was a knock at the door. Our neighbor, Jim, had arrived bearing brisket and potato salad. Although the meal was a few minutes late for tonight’s dinner, we would eat it tomorrow.

About an hour after dinner I returned to the hospital so that I could be there during the shift change. Dad was sleeping, and while I was in his room, Nakita started his nighttime dosage of antibiotics and albumin. She said that she had just received the orders for new meds for Dad and she wanted to administer them before she left for the day. She added that his vital signs hadn’t changed since we had left for dinner.

I left the hospital at 7:15 P.M. This had been a depressing day, and I was nervous about the next 12 hours. On the way home, I stopped by HEB for some much-needed ice cream and wine.


Shaky progress, but still recovering

September 2, 2018. Sunday mornings at the hospital are usually pretty quiet, especially in the parking lot. On Sunday, I can get a decent parking space, unlike most other days. However, today while I was walking from my car to the hospital, the usual quiet was disrupted by a hospital employee who was chasing and calling after a resident “runner.” During the day, you periodically hear announcements about missing patients who wander away from their rooms, but rarely have the patients left the premises. I tried to imagine the backstory to this event that broke the monotony of the walk into the hospital.

shakycross2I arrived at Dad’s room at 7:45 A.M. His breakfast tray had arrived and was on his bedside table. He was still sleeping, but I was able to wake him easily. He finished about half of his breakfast before the physical therapist arrived. I never knew if we could expect to see a physical therapist on the weekend and I was pleased that Dad was being seen by a therapist during the holiday weekend. The session got off to a rocky start when the therapist accidentally dumped the contents of Dad’s urine bag on the floor. While she and the nurse cleaned the floor, which took a little over five minutes, Dad was able to sit without assistance on the side of the bed. The therapist was hesitant to have Dad stand up because his blood pressure was a bit low, but eventually, she decided to let him try. After standing, she retook his blood pressure, and it had elevated into the normal range. Because an aide didn’t assist her today, the therapist did not have Dad walk. Instead, she had him sit and stand a couple of times and then do some leg exercises on the bed.

After therapy, Dad was alert enough to swallow his morning pills of Midodrine and aspirin with juice.

This morning, Dad was fixated on dreams from last night about his father’s surgery and “what they’re doing to him at this place.” It was a confusing conversation because his father had died of a pulmonary embolism in 1957. I was able to get him to drink a couple of cups of coffee, hoping that it might help him clear his head and to stay awake.

shakycross3Unfortunately, the effect of the coffee was short-lived, and Dad fell asleep moments before Stan and Mom arrived. Although he was awake when Dr. Hunt, the attending physician, arrived, he was very groggy. When the doctor questioned Dad about why he was in the hospital, he said that he was in Temple because of a broken leg, which was closer to reality than his answers yesterday.

I, not to mention his night nurse, was concerned that Dad’s biological clock seemed reversed. From what I had heard from the nurses, he was awake most of the night and then slept during the day. When I asked the doctor about what we could do to switch Dad’s inner clock, he said that he would check with neurology. I told the doctor that at home, Dad often took ½ of a Simply Sleep pill (which was ¼ of the recommended dosage), so they should exercise some caution when prescribing sleeping medication. The doctor said that he would check the ingredients in these pills and note on Dad’s chart that they should start Dad on low dosages of any sleeping medication.

Mom and I left for church at 10:20 A.M. After church, Stan told me that Dad had been awake about 75% of the time that we were gone, but that he was still a little confused.

shakycross3Nephrologists base many of their healthcare decisions on the amount of liquid gold (urine) collected during a 24-hour period. When the nephrologists arrived for their morning rounds, Stan told them about the physical therapist’s mishap with the urine bag. However, they weren’t concerned and said that after taking diuretics yesterday, Dad had voided a liter of urine, so they would not dialize today. Instead, they would check his lab results tomorrow before dialysis to see if his kidneys were removing the toxins and electrolytes in his blood. Because Mom and Dad didn’t like the Scott & White dialysis center, we would need to arrange for Dad to receive dialysis at another location—one that wasn’t conveniently located near their home. This refusal to use the local dialysis center was an inconvenience that they would regret and that I wished that we could avoid. In any event, the nephrology team planned to get Dad started on a Monday-Wednesday-Friday schedule that would continue following his discharge from the hospital.

Following our lunch at home, Stan, Mom, and I returned to the hospital at 2:30 P.M. Dad was sound asleep, but I was able to rouse him for about two seconds. I had been looking forward to this weekend so that Dad and Stan would have time to visit. Dad’s inability to stay awake was torpedoing my plans, and I hoped that the doctor would prescribe something for Dad that would enable him to sleep tonight. Tomorrow was Labor Day, and I wanted the guys to have time to visit and perhaps play cribbage.

shakycross2At 3:00 P.M., Kayla, Dad’s nurse, set up the creatinine test that had been ordered by the nephrologist. Before she was finished, Maryline, Dad’s aide, entered the room and said that she was going to bathe him. I told her that his toothbrush was in his travel shave kit that was in his closet, so she said that she would also brush his teeth. While Mom and I waited in the 6 North waiting room, Stan drove to Starbucks to get us some coffee. Kayla came and got us at 3:45 P.M. When I went back to Dad’s room, I noticed that his teeth looked shiny and clean.

shakycross3He slept for most of the afternoon but woke up for dinner, although he was still very confused. He kept saying that something was different. We couldn’t figure out what he was talking about and what was different. I wished that he could have given us some clue as to what he was talking about. After he finished eating, Mom, Stan, and I returned home. I said a quick prayer that Dad would get a good night’s sleep. He seemed to be progressing well, but I wanted him to be more awake during the day.


A little more recovery and a little less drama

September 1, 2018. My days at the hospital were full of impromptu meetings with healthcare providers and with caregiving activities in between, none of which was really scheduled and all of which was really important for Dad’s recovery and well-being. For me to be present for all these meetings and ensure that all caregiving was taken care of, it was practically impossible for me to leave the hospital to run errands during the day. Also, by the time that Mom and I left in the evening, we were usually too weary to fight the rush hour crowds in the stores. Fortunately, most stores opened early on Saturday, so today I ran a couple of errands on the way to the hospital. Mom stayed at home to wait until my husband, Stan, arrived from Houston. I arrived at Dad’s room at 7:35 A.M. to find that Dad was sleeping and his breakfast tray was on his bedside table, which was not unusual. What was unusual was that his bed was no longer in the center of the room. Instead, it was pushed within a few inches of the outside wall. I suspected that the furniture rearrangement was the result of Dad attempting or succeeding to get out of bed last night.

He was easy to wake, and I was glad that he was no longer fixated on the annotation on his bandages. However, within a few moments of waking, he became fixated on “one day’s paper,” a topic that I could not understand, and I could not divert his attention elsewhere.

morerecoverycross1I was glad when Dr. Blake Tanner, the nephrology resident, entered the room, thinking that Dad might turn his attention to another subject. However, I was a bit disturbed when he could not answer the doctor’s questions about where he was or the year, which were daily questions to ascertain mentation. Dr. Tanner said that they would hold off on dialysis and diuretics today to see how Dad’s kidneys functioned. In one of the days where they gave him diuretics, Dad voided 300 ml of urine; on a day without diuretics, he voided 350 ml, so they wanted to see how his kidneys functioned today. Depending on today’s results, they might dialyze him tomorrow. The doctor checked for swelling in Dad’s legs, but they still seemed to be fine. He said that they were waiting on the results of the morning labs, but he didn’t think that they would see anything that would alter their plan. They hoped that the Midrodine would elevate Dad’s blood pressure enough to get the kidneys to produce more urine.

Now that Dad was fully awake, I wanted him to eat. Because he was low in his bed, I used the call button to summon someone to help me adjust him in the bed so that he could eat. His sheets were also wet from wound seepage, which I also wanted to be addressed.

img_0030After waiting for 35 minutes, Storie and Miguel, the nurse and aide (CNA) entered Dad’s room. When I asked about the location of the bed, Storie told me that they had been told that they could not move the bed back to the center of the room because Dad was a fall risk and an escape artist. While they were changing Dad’s gown and adjusting his position in the bed so that I could raise the head of the bed, I ran downstairs for a cup of coffee.  When I returned, I heated up Dad’s breakfast and started to feed him, but he fell asleep before we had made much progress. He still needed to take his morning meds, which was an ordeal when he was half asleep. Fortunately, he still had some Cream of Wheat in his bowl, and Storie was able to crush his pills and mix them in the warm cereal. He made a face as he took the nasty concoction, but at least we were successful in getting the pills in him without him choking on a liquid while trying to swallow the pills. By 9:10 A.M., Dad was sound asleep.

Five minutes later, he was wide awake and wanted to drink his Nepro. He was able to hold the container of Nepro without spilling it, which was an improvement from yesterday. His dexterity suffered when he was in the hospital, and the presence of the oximeter on his hand didn’t help matters. He nibbled at most of his breakfast, but I was pleased that he drank all of his Nepro. By 9:30 A.M., he was sleeping again. It was almost startling how quickly he could wake up and fall asleep.

glacialspeedcross2At 11:45 A.M., Miguel took Dad’s blood sugar and it was 42 (normal is 100), which prompted him to call the nurse.  Storie entered the room with Shelly, another CNA, and had him drink a couple swallows of orange juice. Shelly then had the nearly impossible task of getting Dad to consume a tube of a substance similar to Karo syrup. He hated the taste of it and she practically forced it into his mouth.

At noon, his lunch tray arrived, and Stan and Mom arrived a few minutes later, at 12:15 P.M. While I updated them on the events of the morning, Miguel returned to recheck Dad’s blood sugar. It was now up to 73, which was still very low, but it was no longer dangerously low.

morerecoverycross1At 12:45 P.M., Mom and I left Stan with Dad while we drove a few blocks to Chick-fil-A. The nephrology team entered the room at 1:00 P.M., followed by Bonnie, the physical therapist. I knew that the nephrologists’ visit would be short, and I asked Bonnie if she could wait. She said that she didn’t have time to wait and left. I hated that Dad might miss a physical therapy session and hoped that she would return soon.

I was relieved when Bonnie returned, but we were unable to wake Dad. Thinking that it might be his blood sugar, she summoned the CNA to recheck it, but it was now up to 101. She eventually left.

I had been working on an embroidery project, but the new room rearrangement made it impossible to work in Dad’s room. Now that Stan was here, I felt that I could leave the room, so I moved out to the 6 North waiting room. At 2:15 P.M., Stan came to the waiting room to tell me that they were giving Dad some albumin to increase his blood pressure. Dad had been pretty drowsy today, and I hoped that the albumin would help him stay awake.

glacialspeedcross1At 3:15 P.M., the nurse pulled out Dad’s central line on the left side of his neck, which had been replaced by the tunneled line yesterday. He added that Dad’s blood pressure was 113/65, which was good.

At 4:00 P.M., he started receiving Lasix, a diuretic, which meant that something had changed to make the nephrologists change their minds about holding diuretics today. Right around that time, the hard disk failed on the computer in Dad’s room, which was very inconvenient for the nurses, who now had to use the computer in the room next door to access and update Dad’s chart. Because it was Saturday, and a holiday weekend, the nurses didn’t hold out much hope for getting the computer fixed, although they had a few conversations with the IT support person who was on call.

At 5:30 P.M., in preparation for his dinner, I asked Shelly, his new nurse, to reposition Dad in his bed. At 5:45 P.M., Stan and Mom went home to start preparing our dinner while I stayed to help Dad with his dinner. I thought that feeding Dad would take only a few minutes, but I was very wrong. He was talkative and asked dozens of questions about his condition. He was able to eat and swallow well, but the talking slowed the progress. When he had finished his dinner, he wanted me to stay and review his situation and plans with him. Stan texted me a couple of times to see if everything was OK.

morerecoverycross1Dad was still very confused, but our conversation was light and humorous and eventually centered primarily on his catheter, of all things. He had been concerned that he was being forced to stay in bed and didn’t realize that he had a Foley catheter. I eventually left the hospital around 7:00 P.M. I found his night nurse and warned her that in spite of my best efforts, Dad had slept for most of the day and that he was wide awake now. She groaned as I left and I wished her luck. I was glad that we had had a good talk and I prayed that it would be a good night for Dad.



A good day in the ICU gets Dad one step closer to a room on the patient floor

August 27, 2018. Mom and I arrived at Dad’s room around 8:30 A.M. Dad was a little confused about where he was and why he was there, and I spent a lot of time trying to explain his situation to him.

hip1At 9:50 A.M., Adan arrived at Dad’s room with Emily, his trainee, to conduct a swallow assessment. I was relieved to see him and knew that Adan would conduct a proper assessment that wouldn’t adversely impact Dad. Before he started, Adan left the room to review Dad’s chart. Within moments of his return, the doctor and his entourage of residents and other providers stopped by Dad’s room for morning rounds, which meant that Adan had to postpone his assessment. After conferring with his associates for a few minutes, the doctor told me that Dad’s hemoglobin and platelets were low. It seemed counterintuitive to me, but the doctor said that he’d probably order blood thinner for Dad to address both problems. Because Dad’s fistula had clogged during his last dialysis session, the nephrologist had entered an order for Dad to go to interventional radiology (IR) to have his fistula checked out. If Dad was lucky, clearing out the clog would be a simple process. If the interventional radiologist could not clear the clog, he would need to insert a dialysis catheter in Dad’s neck. I said a silent prayer for Dad’s good luck.

Shortly after the doctors left, Adan and Emily returned. In case a patient aspirates fluid during a swallow study, it’s important to have a clean mouth so that a minimal amount of bacteria goes into the lungs. Because Dad had not brushed his teeth since he arrived five days ago, Adan had him brush his teeth before starting the test. After observing Dad drink some water, Adan said that he had a productive cough and a good swallow. They then had Dad drink some cranberry juice, followed by some pudding. I was thrilled when Adan said that he had not observed any sign of dysphagia, and would order a menu for him. He warned us that food trays get a low priority in the ICU, so he couldn’t guarantee when Dad would get a meal. As Adan left the room, he said that Dad was probably the healthiest person on the floor, which was the best news that we had heard since Dad entered the hospital.

At 10:15 A.M., I saw a familiar face walk by the door. I quickly left the room and was able to stop Dr. Heath White. We had had quite a history with Dr. White in 2015. He had tended to Mom after her stroke and then had periodically been Dad’s attending physician for a couple of months. We chatted in the hall for a few minutes, and he said that he was surprised that it had been three years since he had seen Dad. While we were talking, he pulled out his phone to peruse Dad’s charts to see when he had last added a note to Dad’s chart. As he left, he told me to contact him if we ever had any pulmonary problems. It was good to see a familiar face, and I regretted that he had not had an opportunity to see Dad last year when he looked and felt so well. As much as I liked Dr. White, he had often had negative predictions about Dad’s prognosis.

hip3At 11:00 A.M., Leslie removed Dad’s feeding tube. She then told me that she had started Dad on a new blood thinner to prevent clotting. Because his hemoglobin was low, he might receive a blood transfusion. We had been down this low hemoglobin path three years ago, and I hoped that one unit of blood would do the trick.

Now that Dad was more alert, he talked a blue streak. Not everything that he said was based on reality, and he was still confused about where he was. He thought that he would be going to a hotel and that he would be coming home with us tonight. However, when he and Stan talked about sports or chores that Stan could do around the house, Dad was as lucid as the rest of us. I couldn’t wait until he was moved out of ICU, an environment that often contributed to confusion and delirium.

home4Cross4Shortly before noon, an aide from food service brought Dad his lunch tray. His first meal in five days consisted of puréed chicken noodle soup, milk, iced tea, and orange sherbet. Because he thought that the consistency of the soup was like a milkshake, he decided to use a straw to eat it, which proved to be very messy. While holding the bowl, he tipped it, and half of the soup ended up on the bed. He was able to consume some of it before he devoured the sherbet. Eating again was an important milestone. Although it had been a messy meal, I was practically giddy with relief that he had been able to eat.

After Dad was cleaned up from his lunch, Mom, Stan, and I went home for our lunch. Stan then left Temple around 1:30 P.M., hoping to beat Houston’s afternoon rush-hour traffic. Shortly after he left, I received a text message from Pastor Tom. He indicated that he had spoken with Dad, but he wasn’t sure what was going on and asked me to call him to clarify Dad’s status. Dad was pretty lucid when it came to talking about yard maintenance or sports, but he was pretty confused about his status and what was happening to him. I could understand how Tom would also be confused following a conversation with Dad.

When Mom and I returned to Dad’s room shortly before 3:00 P.M., Dad was sleeping. He woke up to let us know that he would be receiving some blood and platelets. Leslie came in a few minutes later and confirmed that he had been typed and matched and was ready to receive the transfusion when the blood arrived. I was pleased that Dad could accurately relay some information to us about his status.

hip5Dad’s status had improved dramatically. He no longer required medication to elevate his blood pressure, and now he was eating. He was still a sick puppy, but not sick enough to warrant ICU care. I had hoped that Dad would be moved from ICU to a patient room, but now that move seemed doubtful for today. The hospital generally does not like to move patients from ICU while they’re receiving blood. It was getting late, so we were not sure if the IR schedule could accommodate Dad.

As we were preparing to leave the hospital at 5:30 P.M., Leslie told us that Dad should be moved from ICU to 634 North before the shift change. If his food tray arrived after the shift change, she said that she would take his dinner tray to him. Although the 6th floor had a higher patient-to-nurse ratio, she said that they had many more aides and that one of the aides would assist Dad with dinner. When I asked about the blood transfusion, Leslie said that he should be able to receive blood overnight.

steadyCross2When I returned to my parents’ house, I wrote an enthusiastic email message to my sister-in-law, telling her about the turnaround in my father’s health in the past couple of days. Today had been a great day. Dad hadn’t had his fistula checked out, but it felt like he had turned a corner. Mom and I both felt optimistic about Dad’s prognosis.


Are we about ready to leave the ICU?

August 26, 2018. After having spent an enjoyable evening in Johnson City, Stan and I left for Temple at 7:35 A.M. We arrived at my parents’ home at 9:40 A.M., unloaded the car, and headed to the hospital. Unfortunately, we just missed seeing the doctor during rounds. Dad was on dialysis, which had started at 6:00 A.M. Rachel, the dialysis tech, stopped by shortly after 10:00 A.M. to check on Dad, and said that he hadn’t put up any fuss when she started the SCUF dialysis session. I was glad that he was having more fluid removed and was encouraged that he could withstand the loss of the fluid while still maintaining adequate blood pressure. I had hoped that Natalie would be back as Dad’s nurse and was a little disappointed to see that the name Leslie had replaced hers.

steadyCross1Dad had slipped down the bed, and I used the call button to summon a nurse to reposition him. Instead of Leslie, a male nurse and a female aide entered the room. I immediately recognized the nurse as Fred and said that the last time that I had seen him, his wife had just had a child. He recognized me but said that he didn’t think that I was correct because his youngest daughter was three years old. When I told him that Dad had been a patient here in 2015, he said that he hadn’t realized that that much time had elapsed. It seemed like a mini-homecoming in some alternate life.

Dad talked a lot this morning, and most of what he had to say was pretty depressing. He said that he thought that he and Mom had changed mentally, and he implied that his life wasn’t worth saving. Today was the first day that he’d been talking since the surgery, and I asked him to wait another day before we discussed these serious topics. This talk was also upsetting Mom, and I wanted to redirect the conversation.

hip1Because we had missed the morning rounds with the doctors, Leslie provided us with an update. They had changed his antibiotic, but his white blood cell count was still trending upward.  I told her that I had fed Dad some gruel on Thursday morning and was wondering if he could begin eating again. She said that she would try a bedside swallow test to see if he could swallow a pill. I told her that with his history of aspiration, we would prefer to have Speech involved in any swallow test. If she did do the bedside swallow test, I asked that she not use a straw, which changes the shape of the mouth during swallowing and can affect the test.

The nephrologist and his resident stopped by shortly after 11:00 A.M. The doctor asked Dad how he was doing, which was a mistake on his part because Dad started complaining about the hospital, beginning with his stay in 2015. When the doctor explained that Dad was having dialysis to remove fluid, Dad started to give him some attitude about having dialysis. While I was explaining to Dad about the stress that the excess fluid had on his organs and why he needed dialysis, the doctor left. I was certainly glad that Dad was awake and somewhat alert, but he was not the greatest patient in the world and was a bit challenging to control. When Dad asked me what we were going to do for the rest of the day, he got a little annoyed when I said that he was going to stay in bed. By 11:45 A.M., the cold of the hospital was beginning to bother Mom, so she and I went home for lunch.

hip2When we returned to the hospital at 1:30 P.M., I was surprised to see that Dad was off of dialysis. Leslie said that because his fistula had clogged, they had stopped his session 90 minutes early. Still, they were able to remove 2,225 ml. During the past two days, just over 4 liters of fluid had been removed, and Mom and I saw a noticeable difference in the size and weight of his legs.

At 2:50 P.M., Dad had slid down in the bed, and I called for a nurse to reposition him. While the nurses were preparing to move him, they noticed that he was bleeding slightly from his fistula in his left arm. The moment that they moved him, it was like a dam broke and the fistula started bleeding—a lot. The nurses called for some assistance, and Angel, one of the hospital’s top 25 nurses, entered the room. When Angel called down to the dialysis center for advice on how to stop the bleeding, he was told to keep applying pressure until the bleeding stopped. When Rachel, the dialysis nurse, showed up at 3:05 P.M., she said that his fistula had seeped just slightly yesterday, but she saw no real bleeding. By 3:25 P.M. the bleeding had stopped, enabling the nurses to replace his bandages and change his gown and bed linens. About 30 minutes later, Christina, the dialysis resident, stopped by with Rachel to check the fistula.

hip5At 4:30 P.M., Leslie stopped the Levophed drip, which had been keeping his blood pressure at a safe level. She had already reduced it to the lowest dosage earlier, and Dad had been maintaining a MAP of 79 (80 being perfect). Some 15 minutes later, his MAP had dropped to 68. As we left for the day, I hoped that Dad’s blood pressure would stabilize on its own and not dip below a MAP of 68.

As tired as we were when we left at 5:00 P.M., I dreaded leaving him alone. Historically, most of his problems developed when we weren’t there to watch over him. I was so anxious when I wasn’t with him that I was starting to rely on sleeping pills to sleep.



Is this fall number 5 or 6?

July 25. Dr. Ebert’s nurse called me today. She had repeatedly called my parents’ phone number but there had been no answer, and she was concerned that she might not have their current phone number. I confirmed that she had the correct phone number and suggested that she keep trying. About 30 minutes later, Dad called me to see if I had called him. Evidently, he had heard the phone, but my mother was away from home and he had not been able to answer it before it stopped ringing. I told him that the call was most likely from Dr. Ebert’s nurse. I couldn’t tell him why she was calling, but I was certain that she would attempt another call.

ouchCross4When I called Mom a couple of hours later, she told me that Dad had not walked or exercised since Stan and I had left on Sunday, three days ago. I suggested that she move Dad’s little step into the living room so it would be easier for him to access and perhaps use it. I didn’t think that it was a reasonable substitute for walking, but it was better than nothing. During our call, Mom told me that Dr. Ebert’s nurse had called to tell them that Dad’s November 20 nephrology appointment had been changed to Tuesday, July 31 (next week!), at 3:30 P.M. I was relieved that the appointment had been moved up because I didn’t think that Dad or his kidneys could wait four months to see a nephrologist. Also, with this schedule, I could do my volunteer shift at the wildlife center, drive to Temple for the appointment, and then come home on Wednesday in time for my shift in the cattery at the SPCA. Everybody wins.

fallGuyJuly 26. I called my parents’ home numerous times today, starting at 3:00 P.M. Finally, at 4:50 P.M., Mom answered the phone. I could hear Dad’s voice and a woman’s voice in the background, and Mom said that she would call me in five minutes.  When she called, she told me that Dad had fallen while trying to walk from the car into the barber shop. As they were coming home, neighbor Jo’s aide saw them and offered to help. She wheeled Dad into the house and started bandaging his bloody arms.

Upon hearing this news, I lost my cool. When we were in town this past weekend for Stan’s birthday, Mom mentioned that Dad needed a haircut. I told her to wait until we returned so that Stan and I could help get Dad into the inaccessible shop. Mom said that as soon as Dad fell, she could hear my words in her ears. I told her that she and Dad needed to reassess their living options, and she said that they would never live in a nursing home. I wished that they understood that they had options other than their large, unmanageable home or a nursing home.

Before I hung up, I told Mom to contact the orthopedic surgeon and schedule an X-ray to ascertain whether or not Dad had broken or rebroken any bones.

home4Cross3July 27. After spending a few hours away from home today, I logged on to Dad’s MyChart account and noticed that his Tuesday appointment with the nephrologist had been rescheduled to a date and time that I could not make. The change was required to accommodate a new appointment with the orthopedic surgeon. I called Mom to see if she would let me try to reschedule the nephrologist appointment to a more convenient time for me, and she agreed. I spent the next 30 minutes on the phone with a very patient woman who worked at the appointment desk at the dialysis center. I was able to reschedule the appointment with the nephrologist to Monday afternoon. It wasn’t the most convenient time, but I could make it work without missing any of my commitments or appointments in Houston.

July 29. After attending my church in Houston, I packed a small bag and drove to Temple. Traffic was better than I would have expected on a Sunday afternoon, but parts of US 290 still left me white knuckled. Although the seemingly 100-year construction project was nearing completion, some of the road conditions were still far from ideal.

gliderhairWhen I arrived at my parents’ home, Dad was sitting in a glider chair with his legs resting on an ottoman. It was the first time since his surgery in March that he had been able to get himself in this chair. In addition to it being much more comfortable than his wheelchair, having his feet elevated might help reduce the swelling in his legs. Unfortunately, while he was on the glider, he was watching the Texas Rangers beat the Houston Astros.

After dinner, the three of us played a game of Oh Hell, and Dad won.

July 30. Besides the afternoon appointment with the nephrologist, Dad had a 9:10 A.M. appointment with the lab. According to my parents, Dad seemed to be having weekly trips to the lab for blood draws. Each specialist ordered lab work that addressed only his or her area of specialty. With any luck, Dad wouldn’t need any more blood draws for a few weeks. After we returned home from the lab, Dad helped me assemble a canvas stretcher for an art project. Before we were finished, I had hauled at least six different tools from his workshop into the living room, but we had a good time working with the difficult stretchers.  After lunch, we all snoozed for a few minutes before going to the dialysis center to meet with Dr. Maaz Syed Ahmed, the nephrologist.

My parents had a little difficulty understanding him, but they liked this doctor. He encouraged Dad to keep taking one pill/day and to monitor his weight and blood pressure. Dad’s creatinine level was elevated above high normal, but the doctor didn’t think that that Dad’s level was alarmingly high. The doctor also did not recommend that Dad resume dialysis, but he provided the following guidelines:

  • Restrict fluid intake to less than 50 ounces per day.
  • Do not exceed 2,000 mg of sodium per day.
  • Schedule an appointment with a wound specialist to address the wounds on his legs.
  • Walk as much as possible, but when seated, keep his legs elevated.
  • To address any pain, take Tylenol. Do not take aspirin or Advil.

The doctor asked Dad to schedule a couple of follow-up appointments before we left the building. Dad now had another appointment in October with the nephrology PA and then in January with Dr. Ahmed. I hoped that Dad liked this doctor enough to follow his recommendations, which seemed to dovetail with Dr. Ebert’s advice on July 17.

As soon as we returned to their home, I packed up my car and drove back to Houston, arriving shortly before 7:00 P.M.

PenultimateFullSizeRenderAugust 3-5. After Stan arrived home from work, we drove to Temple and spent the weekend with my parents. Dad ignored my requests to walk with him and did not walk during the weekend. He and Stan built a higher step, which Dad was excited about using. I still didn’t think that the step was a reasonable substitute for walking, but Stan gave me a look that suggested that I not raise any objections. Dad had enjoyed working on this little project with Stan and felt that it would help him. For me to raise objections wouldn’t accomplish anything and would only irritate Dad.

As expected, we played Oh Hell Friday and Saturday nights.

August 7. Mom was not at home when I called today, so Dad and I had a chance to discuss her birthday dinner. She would be 91 in a couple of weeks, and Dad had assured Mom that I knew how to prepare her favorite food, chicken-fried steak. I had never fried a chicken, let alone steaks, and I was thankful that I had a membership with Omaha Steaks. I was pretty certain that they knew how to prepare chicken-fried steak. Because Mom loved balloons, I planned to get her some, and I also planned to have flowers in her honor delivered to the church for the August 19 services.

August 9. Dad accompanied Mom to the store today, but he stayed in the car. He had not been walking, but he had convinced himself that using the little step that he and Stan had made would be an adequate substitute for walking. Evidently, getting Dad from the house into the car was a real struggle, and it became clear to Mom that walking was important. She decided that Dad must start walking again and planned to broach the subject with him. I stressed to Mom that he needed to walk over the weekend so that he could get into the car on Monday for his physical therapy.

August 12. Dad didn’t walk today, but Mom said that she was able to help him transfer from his wheelchair into the glider chair (with ottoman). She said that he fell asleep as soon as he was situated. I was glad that he was out of his wheelchair and sitting with his legs elevated. I’m unable to watch television in these glider chairs because their soothing gliding action puts me to sleep within moments.

fallGuyAugust 13. Dad slipped or fell out of bed this morning while trying to transfer from the bed to the wheelchair. According to Mom, it took her about 30 minutes to get him up and into the wheelchair. This event marked the second time in the past couple of weeks that he had slipped to the floor. Getting Dad up and off of the floor exhausted Mom, which concerned me. Fortunately, he didn’t have a physical therapy appointment until 10:30 A.M., so they both had a little time to rest before they had to go to his physical therapy appointment with Christi. Shortly after PT started, Mom and Dad told Christi about his fall this morning. She stopped the therapy session and scheduled an appointment for Dad later in the day with the orthopedic surgeon’s PA. She said that she would consult with the surgeon and then call my parents to see if they should continue therapy. The therapist strongly suspected that Dad would require hip-replacement surgery. Ye gods.

August 15. My parents still hadn’t heard from the surgeon’s office, which meant that Dad was just sitting around without any physical therapy—regressing.

I was a little anxious about today’s activities. Tomorrow was Mom’s 91st birthday and her driver’s license would expire. The Temple DPS office was small, and when the 30 chairs inside were full, people had to wait outside in the 100-degree heat. Mom planned to go early to avoid the worst heat of the day, but I worried about her standing outside in the heat and sun. I also was worried that she might not get her license renewed, which would create an impossible situation for my parents. Until Dad was up and around, she was the only driver in the house.

badRehabCross1When I called Mom this evening, I was pleased to learn that she waited only 15 minutes outdoors and then another hour inside. Even better, her license was renewed. One hurdle down, numerous more to go.

August 16. Today was Mom’s 91st birthday. On this date 41 years ago, Elvis Presley died, and later today we learned that Aretha Franklin had died of pancreatic cancer. After Mom and I discussed the sad news of the day, she told me that someone from the surgeon’s office had called and scheduled a pre-op visit for Dad on Monday, August 20, followed by surgery on Wednesday. I just hated the thought of more surgery. It seemed to me that we were back to where we were on March 24 when Dad fell and broke his hip, and I dreaded the thought of another hospital stay.


Chugging along the rickety tracks to rehabilitation

May 2, 2018. The month of May seemed to be getting off to a good start. According to Mom, she had been successful in getting Dad to walk a little around the house. My heart almost stopped when she told me that she also took Dad to his barber for a haircut. Although you can park in front of the barber shop, it’s not exactly an accessible trip from the parking lot into the shop. Had I known in advance about this excursion, I would have been a nervous wreck worrying that he might fall while negotiating the front walkway. I was glad that I didn’t learn about this outing until after the fact.

chugginCross3When I spoke to Mom on the following day, she told me that Dad had had a good day in physical therapy and that they both liked the new therapist.

I had been in Johnson City for a workshop and had planned to spend the night there. Because I felt like I was coming down with a cold, I decided to drive to my parents’ house tonight instead of tomorrow morning. I wasn’t happy to be visiting them when I was sick, but Mom was looking forward to seeing me that weekend, sick or not. I’d had to be vigilant with my hand washing to ensure that I didn’t spread my cold germs around their house.

May 11. Mom is a meat-and-potatoes gal from way back, so for Mother’s Day, I thought that I would serve her filet mignon. I purchased some nice steaks and side dishes from Omaha Steaks for our early Mother’s Day dinner tomorrow night.  Shortly after Stan got home from work, we drove to Temple for the weekend.

chugginCross1When we arrived, I told Dad that I had taken care of tomorrow night’s dinner. He then told me that he had already planned Mom’s dinner, which surprised me. For many years, we had had an understanding that Mother’s Day dinner was my responsibility, although we often discussed the menu and the logistics of the meal. Now that he was confined to a wheelchair, I had assumed that he would not be able to share in the dinner preparation. Because I wanted to grill the steaks, a task better done in the evening, we agreed to have the steaks for dinner on Saturday and the dinner that he had planned on Sunday for the midday meal.

May 13. While Mom and I attended church, our husbands played cribbage. Whenever we were in Temple, Dad did not take his diuretics, which concerned me. In addition to his not taking the pills, he didn’t seem to be following a renal diet or curtailing his sodium intake. Because any mention of pill, diet, or walking seemed to ignite an argument, I tried to limit vocalizing my concerns during this weekend.

Dad had told me that he would need my assistance with the preparation of today’s Mother’s Day meal, which was an understatement. Although he had planned a nice menu for Mom’s dinner, Mom and I ended up preparing the meal. In addition to shrimp cocktail, barbequed spare ribs, green beans, and twice-baked potatoes, Dad also planned on Mom’s strawberry pie and Jell-O salad. We had a full weekend of eating high-on-the-hog. Unfortunately, as I had suspected, Dad did not take any diuretics while we were there.

chugginCross2May 14—17. Dad attended physical therapy today and would do so again on Thursday, three days later. He didn’t get out of his wheelchair on the days between his sessions; however, he felt especially positive after his Thursday session and said that he was getting ready to get rid of the wheelchair. I was hopeful that he had changed his attitude about exercising between sessions and that he was becoming inspired to get better.

May 21. Because his physical therapist did not come to work today, Dad’s therapy session was canceled. Unfortunately, he didn’t take the initiative to walk around the house either. When Mom tried to get him to walk the next day, he said that he was too stiff to walk. If I had been sitting in a wheelchair for 12 hours a day, I’d be pretty stiff too. I hated that wheelchair.

chugginCross4May 24. I suspected that Dad didn’t have the greatest physical therapy session today. According to Mom, Steve, the physical therapist, lectured Dad about the need to exercise between his physical therapy sessions. I hoped that Dad would listen more to Steve than he did to me. Dad had been out of the rehab center and had been attending outpatient physical therapy since mid-April and I could not see much of an improvement in his mobility. If anything, it seemed to be getting worse.

May 26. I had not planned to go to Temple this weekend, but something in Mom’s voice during our last phone call prompted me to change my mind, and Stan agreed that I should go. When I arrived, Dad was in his wheelchair, trying on a pair of new shoes that had just arrived in the mail. The shoe size was larger than what he had been wearing, but he could not get them on his feet. I was appalled by the level of exertion that he expended trying to get the shoes on his feet. You would have thought that he had just finished the four-minute mile. When I later asked Mom if he had been taking his diuretic, she said that he had had not taken a pill in quite some time.

chugginCross3My parents had planned another trip to the barber later today. Instead of taking him in Mom’s LeBaron convertible, I decided to drive him in Stan’s new SUV. We were able to get Dad into Stan’s car, but the trip from the car to the barber chair was a bit harrowing, and we practically dragged Dad the last couple of feet and into the chair. Fortunately, because it was a holiday weekend, the barber didn’t have any customers and was able to assist us. More harrowing than the walk in from the car was the walk back to the car. Once again, the barber saved our bacon and was able to help us maneuver Dad back into the car. The barber and I could barely get Dad safely to and from the shop. There was no way that Mom would have been able to manage Dad without me. Because he had been able to negotiate the walk on May 2, it seemed that his condition was worsening. I couldn’t understand why Dad and his physical therapists were not alarmed.

I could tell that Mom was exhausted, and I was glad that I was there to help her. I also decided that I was going to help Dad to walk. He was able to walk 88 feet once today, but the next two times, he had to stop and rest for a moment at the halfway point.

chugginCross1I asked him if he had to stop because of pain (from the hip surgery) or because of exhaustion. He admitted that it was the latter. We proceeded to have a very civil and productive discussion about his condition. Not only was he easily exhausted, but he was showing signs of severe fluid overload. In addition to having swollen extremities, his legs were weeping fluid. I begged him to take the diuretics, and I told him that if he would, he would regain some of his strength and endurance. He promised me that he would start taking the pills on a daily basis.

The next morning he took his pill, and I left feeling more optimistic than I had in quite some time.

May 29. Dad had his assessment today during physical therapy and he was approved for another 30 days of therapy. Although this seemed like good news, it meant that he was not well. Also, his next appointment was not until June 7, which meant that he had a 9-day gap between therapy sessions.

According to Mom, Dad forgot to take his diuretic today.

chugginCross4June 18. According to Mom, Dad had been taking his diuretics on most days since I saw him on May 26. However, he found many reasons for not taking the pills, like trips to physical therapy. Today he didn’t take a pill because he spent a few hours at the dermatologist having a biopsy for skin cancer on his head.

Stan and I left Houston to spend a week in southern California with his family. While we were there, we also visited with some of my cousins. I wanted to call my parents every day, but the time difference posed some challenges; however, I was able to call them a few times. According to Mom, Dad was taking his diuretics as he had promised me. I was encouraged and looked forward to seeing a significant improvement when I returned to Temple at the end of the month. By that time, he would have been consistently taking the diuretics for three weeks. According to Mom, his legs had stopped seeping, so he was already on his way to reversing his dangerous fluid overload condition.

June 29. Stan and I arrived in Temple at 6:00 P.M. Instead of being pleased with Dad’s progress, it seemed to me that his progress had stalled. His legs weren’t seeping fluid, but his whole body still seemed very swollen. He also wasn’t wearing shoes because he couldn’t get them on his feet. When I asked Mom when he had last taken a pill, she said that she didn’t know.

I tried reasoning with him again about walking and taking the diuretics, but he lobbed excuses at me faster than Serena Williams. When I asked him to walk, he said that he didn’t want to at that time. When I asked if he wanted to get out of the wheelchair, he said, “Not if it means that I have to walk four times a day.”  I didn’t know how to respond. My mother was exhausted from trying to care for him, their 3,400 sq ft home, and their acre of property. I wanted him to get better and stay in their house if that’s what they wanted, but not at the expense of Mom’s health.

chugginCross2While Mom and I attended church on Sunday, July 1, Stan observed that Dad sometimes spontaneously drifted off to sleep while they were playing cards, which was also a symptom of fluid overload. He would sometimes fall asleep at the dining room table at the end of a meal.

I was appalled to learn that Dad wanted to install a ramp off of their patio, presumably to enable wheeling the barbeque grill onto the patio, but I suspected that it had more to do with wheelchair accessibility. He kept saying that he looked forward to activities that required him to walk, but it seemed that he was preparing the house for life ahead in that wheelchair. Mom told me that he wanted to walk again, but you couldn’t prove it by me.

Another fall? Is history repeating itself?

2ndFallFeatureDuring the first weekend of March 2016, our friends Mike and Rhoda visited my parents. The visit went well, and Dad walked around the house with little or no assistance from his cane. We were all pleased and impressed with his progress and felt that his recovery was nothing short of miraculous. Unfortunately, a couple of days after they left, Dad tripped while stepping into the sunken living room. This fall led to some back pain and some minor setbacks.

march_2018As March 2018 approached, these same friends asked if they could join Stan and me during one of our weekend trips to see my parents. My parents love our friends and were thrilled that they had time for a weekend visit. Not only did I look forward to Rhoda and Mike’s company, I hoped that they might be able to provide me with a little perspective. Dad and I are very much alike, and we have a history of digging in our heels. For the past few months, he and I had been locking horns about his diuretics, but perhaps I was too critical of his decision not to take the drugs as prescribed or on any regular basis but only according to his own rules, including not take them when guests, including Stan and me, were staying at the house.

The six of us quickly fell into our routine of happy hour and card games, and we spent many hours catching up on the activities of the past few months.

pegOutCross1Unlike during the visit of two years ago, Dad’s gait seemed unsteady to me, and I practically held my breath as he walked around the house. His legs were swollen, and I was pretty sure that the reason was that he was retaining a significant amount of fluid. I’m far from an expert on the subject, but I could not help but believe that all this fluid in his legs was affecting his gait, and perhaps his center of balance. As I had feared, because my parents had company for the weekend, Dad was not taking the diuretics. I also wasn’t certain when he had last taken a dose or how often he was taking them.

Dad and I are usually the first ones up in the morning, and when I saw him in the kitchen on Sunday morning, I was distressed about his appearance. Overnight, it seemed as if his face had puffed up. I told him that his appearance concerned me. He dismissed my concerns and said that he would not take the pills this weekend.

tubefeed3Fortunately, or unfortunately, my concerns were validated by my friends when they told me that they also thought that Dad seemed unsteady. My husband, who can usually talk me down when I’m overly concerned, didn’t help much when he said that he was also worried about Dad’s gait and the swelling in his legs.

If Dad had had serious renal failure, he wouldn’t have lasted two weeks without dialysis. As the nephrologist had told us, Dad’s condition was borderline. His kidneys were working, but not well enough to eliminate enough fluid, and it was slowly accumulating around vital organs and now in his extremities. The more that I pressured him to take his pills, the more we argued and the more he claimed to be fine.

The following Saturday, Stan and I had been asleep at our home in Houston for an hour when we were awakened by the telephone. Phone calls at 11:00 P.M. have seldom delivered good news, and I strained to hear the answering machine, hoping that it was a wrong number. Unfortunately, the voice that I heard was Mom’s, and I sprang from the bed and raced to the other room to answer the phone.

fallGuyShe had just returned home from the Scott & White Hospital, where she had left Dad. It seemed that shortly before 7:00 P.M., Dad had fallen while stepping up from the sunken sunroom to the family room. Although the sunroom was carpeted, the family-room floor was a hard-tiled surface. Dad was in a lot of pain, and Mom had called 911. X-rays showed that he had broken his hip in the socket and would require surgery to insert two or three pins. His surgery was tentatively scheduled for the next day, Palm Sunday, at 1:00 P.M. Perhaps I’m a cynic, but the idea of surgery on a Sunday set off alarm bells in my head. I couldn’t shake the feeling that the B Teams perform surgery on Sundays.

Stan and I had had a long day and had consumed some alcohol during the evening, so I wasn’t about to drive to Temple. I was shaken after hanging up from my phone call with Mom, and I took a sleeping pill to help me return to sleep. Although I needed to get up early to drive to Temple to be with Mom during Dad’s surgery, I also needed to get back to sleep. I suspected that it would be prudent of me to take my work computer with me. A broken hip at 89 sounded like bad news to me and I feared what might be in store for us as a family.