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.