Hospitalization – Tale of Two Parents

Recovery failed

Published on February 26, 2019February 25, 2019 by mellowdee55Leave a comment

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.

Dad’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.

Right 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.

The 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.

At 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.

Mom 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.

A 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.

At 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.

After 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

Published on February 19, 2019February 18, 2019 by mellowdee551 Comment

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.

As 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.

At 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.

At 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.

Shortly 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.

At 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.

Before 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

Published on February 12, 2019 by mellowdee55Leave a comment

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.

However, 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.

Mom 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.

Dad’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.

At 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.

At 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.

Dr. 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.

By 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.

A fabulous start to the day, but what a crummy finish

Published on February 5, 2019February 5, 2019 by mellowdee55Leave a comment

September 3, 2018. I arrived at the hospital at 7:30 A.M. Dad’s breakfast tray was sitting on the bedside table, but the meal seemed rather skimpy. When I compared the contents of his tray with the slip that accompanied it, I saw that he was missing the cranberry juice, cereal, and coffee. Toshia, Dad’s aide, contacted the kitchen and requested that they bring the missing items. While she was in the room, I asked her if she could get Dad repositioned in his bed so that he could eat. She said that she would request assistance from Isabel, Dad’s nurse.

At 8:15 A.M., just as Isabel and another nurse had just finished repositioning Dad in his bed, Angie and Beverly from physical therapy arrived. During the few minutes that it took for them to rearrange the furniture for Dad’s session, the missing items from his breakfast tray arrived. Once again, Dad’s breakfast would cool off before he could eat it.

Dad was alert, cooperative, and had a great physical therapy session, and Angie said that tomorrow he should be able to spend time sitting in a chair. At the end of this session, I was feeling very positive and was encouraged about his progress. Mom and Stan arrived at 9:15 A.M., just as Angie and Beverly were wrapping up Dad’s session. I was disappointed that they had missed Dad’s best physical therapy session since his surgery.

I reheated Dad’s coffee and laid out his meal for him. He was able to hold the cup and drink his coffee without any assistance from me, and I was thrilled that he was also able to hold his dish of pears and eat them with a spoon without my assistance.

At 10:30 A.M., the nephrology team arrived. They said that Dad’s lab results were good and that he had cleared 650 ml fluid in the last 24 hours. I was pleased that they were satisfied, but based on previous conversations with other nephrologists, I thought that they would have wanted him to produce more urine. Regardless, I was pleased that the day seemed to be progressing well.

Dad had been very alert and his dexterity had improved, so at 10:45 A.M., he and Stan decided to play a game of cribbage. For the past few years, the guys enjoyed their cribbage tournaments, most of which were won by Dad, and they were eager to play again. However, holding cards was a bit more difficult for Dad than holding cups, silverware, and dishes. After a bit of fumbling, Dad told Stan that he was also having trouble seeing the 15s, so the guys abandoned their plan for a game of cribbage before Stan returned to Houston. I think that I was more disappointed than they were. Being able to play a game of cards would have been a significant milestone for Dad. Truth be told, it was a milestone that I needed.

When Dr. Hunt, the attending physician, came by a few minutes later, he told me that he had had the nurse give Dad something last night to help him to sleep, and he wondered if it had worked. Because Dad had been so alert this morning, I assumed that he had had a good night’s sleep. Unfortunately, while the doctor was in the room, Dad became very drowsy and couldn’t tell the doctor anything other than that he was in Temple. It was uncanny how Dad seemed to be sleeping or very drowsy whenever the doctor was present, and I wondered if it was a Pavlovian response.

Dad was awake and alert when the respiratory therapist arrived with a spirometer, a little gizmo to improve his lung capacity. He was supposed to inhale for ten breaths, but he fell asleep after the eighth breath while holding the spirometer in his hand. The timing was unfortunate because he now needed to take his morning meds. Had Isabel entered the room before the respiratory therapist, Dad might have been able to swallow his pills with Nepro, but now I was afraid to give him any liquid. Isabel suggested that we crush the three pills and administer them with pudding, which worked. He complained about the taste, so I had him eat a couple more spoonfuls of pudding to get rid of the nasty taste of pills in his mouth. Within moments he was sleeping again.

Today was Labor Day and Stan wanted to return to Houston ahead of the post-holiday traffic, so he, Mom, and I left the hospital at noon. Dad’s lunch arrived before we left, but I doubted that I could get him to eat it now. I left it on the bedside tray and planned to have him eat it when I returned.

Mom and I were back at the hospital by 1:00 P.M. I reheated Dad’s lunch and called for the nurses to reposition him in the bed so that he could eat. While they were in the room, he kept trying to remove his oximeter and we had a difficult time trying to redirect his attention. When I was finally able to feed him, I could not get him to open his eyes. I tried shaking him, shouting in his ear, and singing, but nothing worked. By this time, it was 1:40 P.M. and I gave up trying to get him to eat his lunch.

Mom and I were still sitting in his room at 2:40 P.M. when Isabel and Toshia came in to bathe him. Until they were finished, Mom and I sat for about 45 minutes in the 6 North waiting room. While we were there, we met a couple of brothers, one of whom had recently recovered from pancreatic cancer. He was now recovering from a minor infection and was being released tomorrow. His was a fabulous story that lifted our spirits.

At 4:30 P.M., the nurse came in with Dad’s afternoon pills, but he was very drowsy and I was pretty sure that we wouldn’t be able to get him to swallow them. She grabbed some chocolate pudding from the kitchen and mixed in the three crushed pills. Fortunately, I was able to get him to swallow a few more spoonfuls of the pudding concoction, ensuring that he got the required dosage.

Fifteen minutes later, the respiratory therapist returned. I told her that the breathing thingy that she had brought Dad earlier had been knocked to the floor by someone in housekeeping. She left the room and brought us another spirometer, although I wasn’t confident that it would get much use. I was pretty sure that we had a couple of these thingys in the bathroom closet at home, still in their original packaging.

Dad’s dinner arrived at 5:45 P.M. He was scrunched down into his bed, so I used the call button to summon assistance to reposition him. After just a short wait, Isabel and Toshia arrived and took his vitals and repositioned him in the bed. He had been talking nonsense for a couple of hours, which continued while they were in his room. Try as I might, I was unable to rouse him enough to feed him.

It was getting late, and I didn’t think that more time with Dad would yield any different results. I used the call button again to summon the nurse so that I could speak with her before I left, but after waiting for more than 15 minutes, I started wandering the halls in search of a nurse or aide. I finally found a nurse and told her that I was leaving and that I had been unable to feed Dad. She said that they would try and I reminded her that because he was an aspiration risk, he needed to have both eyes open when eating.

I also told her that I wanted to speak with a neurologist tomorrow. It seemed to me that Dad had changed dramatically around noon, and his current condition seemed different from anything that I had experienced with him during this or any previous hospital stay. It also concerned me that the change had seemed sudden and occurred when he was using the spirometer. She said that she would add a note to Dad’s chart.

Mom and I finally left the hospital at 6:30 P.M. I had been so happy and optimistic about his progress this morning, but now I was very weary, discouraged, and concerned. On the way home, we saw a rainbow over the hospital, which I hoped was a good omen. After Dad’s sudden change, I was open to all signs of good luck.

Shaky progress, but still recovering

Published on January 29, 2019January 29, 2019 by mellowdee55Leave a comment

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.

I 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.

Unfortunately, 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.

Nephrologists 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.

At 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.

He 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

Published on January 22, 2019January 22, 2019 by mellowdee551 Comment

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.

I 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.

After 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.

At 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.

At 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.

At 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.

Dad 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, but with a little too much drama

Published on January 15, 2019January 14, 2019 by mellowdee551 Comment

August 31, 2018. Mom and I arrived at Dad’s room for his tenth day in the hospital shortly after 7:30 A.M. The room was dark and Dad was sleeping. I opened the blinds to let in some light, but the daylight did not affect him. I was able to wake him, but afterward, he seemed uncomfortable. I asked him if he needed a bedpan, and he seemed to indicate that he did. At 7:55 A.M., I summoned the nurse for assistance, but no one answered the page. Thank goodness that Dad’s need for the bedpan was just a miscommunication.

At 8:10 A.M., Dr. Tanner, the nephrology resident, told me that Dad had had 2,400 ml of fluid removed yesterday during dialysis. He said that the nephrologists needed to know whether Dad wanted to continue with dialysis or use the diuretics to remove fluid following his discharge from the hospital. If he wanted dialysis, the nephrology team would make the arrangements with the dialysis center. I knew full well what Dad’s decision would be. While he was in the hospital, he probably believed he had no choice in the matter, but I’d bet good money, given a choice, he would not want dialysis. The problem was that history had shown that he wouldn’t take the diuretics as prescribed, which is what led to his fluid overload condition and his two falls. He had been healthy and active until he quit going to dialysis. I hoped that Mom might be able to sway his decision.

At 8:20 A.M., Maira and Carrie, the nurse and aide (CNA), changed Dad’s dressings and got him ready for the day. While they were changing his dressings, they said that they didn’t like the look and smell of his surgical wound. Maira said that she would have the doctor look at it. Dr. Hunt chose to delegate this task and called upon the orthopedic team to check Dad’s surgical wound. A few minutes later, a couple of orthopedic residents came by and applied a new dressing. They assured us that the wound was fine and should not cause a problem for Dad.

During the morning rounds Dr. Hunt said that according to Dad’s CT scan, he had had a stroke in the thalamus. I hadn’t been concerned about the CT scan because I was sure that Dad had not hurt his head when he fell out of bed. I now felt like I had the wind knocked out of me. It seemed like Dad couldn’t catch a break. The doctor said that he planned to call neurology to have them check on Dad. In my distress, I texted my husband Stan about this turn of events, which was probably not fair to him. There was nothing that he could do 160 miles from us, except worry.

Once again, the nurse asked me to help Dad with his morning meds. It was a struggle, but I was eventually able to get him to swallow his aspirin and Midodrine pills. A CNA stops by every couple of hours to check Dad’s glucose level. Shortly after the mid-morning reading, Carrie returned with a container of apple juice that she wanted Dad to drink. Evidently, his glucose level was down to 75, with 100 being normal.

So far, the most significant untruth told to us was the statement made by Leslie, Dad’s last ICU nurse. She had assured us that although there was a higher patient-to-nurse ratio on 6 North, they had many CNAs who could attend to patients. Carrie laughed out loud when I asked her about the additional aides. Contrary to the messaging in ICU, the patient floors have five or more patients per RN and as many as 19 patients per CNA. It’s no wonder that the CNAs and nurses appreciated the time that I spent helping Dad to eat and take his meds. These were busy people who relied on family and other patient advocates to assist with patient needs. I was grateful that I was in a position to be with Dad so that I could assist him.

Shortly after the morning rounds, Dr. Harris, a resident from the neurology department, stopped by to assess Dad. Dad was able to push against the doctor and follow a variety of instructions. Dr. Harris said that that the stroke was small and most likely was not the cause of Dad’s confusion, good news that probably improved my blood pressure and stress level somewhat. His current level of confusion was similar to what he had experienced during his previous hospital stay in 2015 and was probably transient and not permanent.

Moments before noon, Angie and Judy, the physical therapist and her aide, arrived for Dad’s session. They had barely started when Dad’s lunch arrived, which was typical. I wasn’t sure if he’d ever enjoy a hot meal in this place. Angie and Judy had just had Dad stand up when the neurological team, led by Dr. Jennifer Rasmussen, entered the room. I asked if they could stop by later after his physical therapy session, but the doctor said that they wanted to watch the session so they could see how he responded to physical therapy, so their timing was perfect. After a couple of minutes, Dr. Rasmussen pulled me aside and said that Dad seemed to be doing fine. She added that the stroke could cause sleepiness, but that Dad should not suffer any lasting effects. I was so pleased that it was all that I could do to keep from hugging her.

Shortly after noon, Perry, a transportation tech, arrived to take Dad to Interventional Radiology (IR) to have a tunneled line put in to replace the IV in his neck. From what Dr. Hunt said, the tunneled line posed less of an infection risk. Mom and I accompanied Dad and Perry so that one of us could sign the consent form. We arrived at IR at 12:30 P.M. After waiting 20 minutes, I got someone’s attention and asked if we could sign a consent form so that we could leave for lunch. Mom and I went to the cafeteria to get our lunch, but we ate in Dad’s room. I had promised Dad that we would be there when he returned, and I wanted to keep that promise. Knowing our luck, he’d be alert, and if we weren’t there, he’d give us holy heck.

At 1:20 P.M., in response to my earlier text message, Stan texted me to see if we could talk. When he called, he said that he could come up tonight if I needed him. Had I not received good news from the neurologist, I might have welcomed his offer, but I didn’t want him on the road with all the crazies leaving town for the Labor Day weekend. Stan was also relieved to hear that the stroke was very minor and promised that he would come up early tomorrow morning.

While Mom and I were waiting in Dad’s room for his return, we overhead a conversation about room 631 north, which was just a couple of rooms away. Apparently, the room had bedbugs. Ye gods!

After Dad was returned from IR, I reheated his lunch, which had been delivered almost two hours ago and was cold. I was pleasantly surprised when I looked up and saw our friend, Marilyn, standing at the door. While she was there, Mom and I learned that the husband of our dear friend Sally had died on August 17. I was acquainted with Sally’s husband, and his passing was a real loss. I felt guilty for being so absorbed with Dad’s hospitalization that I could not console a friend. While Mom and Marilyn were visiting, I helped Dad eat some of the Salisbury steak, pasta, peaches, and some Nepro. He then wanted to taste the pureed chicken noodle soup. I didn’t think that it looked all that good, but he said that it was the best thing on the tray.

While he was eating, I noticed that blood was running down his chest from the dressing that the interventional radiologist placed over the tunneled line. I summoned the nurse, and she called the doctor because the wound seemed to be bleeding profusely. Dr. Hunt called IR, and they said that they would send someone up who could put in a stitch. A couple of minutes later, transportation showed up to take Dad back to IR. Because Dad was bleeding, the nurse accompanied him and kept pressure on the wound. When we arrived at IR, the doctor didn’t want to add a stitch because he thought that it would cause more bleeding. I asked if they could use Steri Strips instead of stitches. The doctor thought that was a good idea and used three on Dad before he applied a clean dressing. Inwardly, I was rolling my eyes. The Steri Strips seemed like such a simple solution. I couldn’t believe that I had to suggest it.

We returned to Dad’s room at 4:15 P.M., and a couple of minutes later Dr. Duran and Dr. Tanner, the nephrologist and her resident, stopped by to discuss the possibility of dialysis tomorrow. Because patients were usually too tired for physical therapy after dialysis, I asked them if they would please dialyze Dad in the afternoon so that he could have PT in the morning. They said that they would see what they could do to accommodate my request.

At 5:00 P.M., the nurse asked Mom and me to leave the room while she cleaned up all of the blood on Dad and changed some of his dressings and his gown. Between Dad’s bleeding episode and the handiwork of the interventional radiologist, Dad looked like an extra in a horror movie.

When we returned to Dad’s room at 5:30 P.M., his dinner was waiting. As I started to get him ready for dinner, he proceeded to complain about everything, starting with his hearing aids. He then made a huge deal about the notations on his many bandages. When the nurses change dressings, they initial and date the top of the bandage so that other nurses can tell when the dressing was changed and who changed it. From Dad’s vantage point, the writing was upside down, and it annoyed him. I tried for a good 15 minutes to explain that the dates written on the bandages were for the benefit of the nurses, and not him, but without success. During this hospital stay, he frequently latched onto some notion like a junkyard dog and would not let it go. With this issue still unresolved, Mom and I finally said that we had to leave for the day. I was glad that he had had a good lunch because with all of his complaining, he hadn’t eaten much dinner. I hoped that he’d forget about the labeling of the bandages by the time that we returned tomorrow.

Some promising improvements toward recovery

Published on January 8, 2019January 7, 2019 by mellowdee551 Comment

August 30, 2018. Mom and I arrived at Dad’s room at 8:00 A.M. Aspen, his nurse, and Amanda, his aide (CNA), were in his room and were changing his dressings and his hospital gown. I noticed that Dad’s breakfast tray had arrived and was still covered. When Aspen and Amanda had finished getting him ready for the day, Amanda and I helped Dad take an aspirin and a Midodrine pill with some of the Nepro on his tray. Nepro is a thick liquid, which helped to make the pills easier to swallow. When Amanda left, I grabbed a bath towel and placed it over Dad’s chest like a large bib. With some help from me, Dad ate most of his Cream of Wheat, a scrambled egg, a few swallows of Nepro, and a few sips of warm coffee. Dad had not consumed any caffeinated coffee for several months, but now I encouraged him to sip the coffee in the hope that it might help him to stay awake. His diet hadn’t restricted caffeine intake and caffeinated coffee was included on his tray, so I assumed that I wasn’t treading on dangerous ground, although assumptions in this place could be dangerous.

Helping Dad to eat was a bit challenging because he periodically fell asleep during the meal. Whenever his eyes were closed, I stopped feeding him. I would not let him put anything in his mouth unless he was awake with both eyes open. When he was finished with breakfast, I noticed that he had dried blood under his fingernails, and I grabbed a washcloth from the linen cart and started cleaning his hands. He bled easily these days, so there was no telling how his nails got into that state.

At 9:30 A.M., I had just sat down after cleaning Dad’s nails when Dr. Hunt arrived. He said that the orthopedic resident had stopped by this morning to change the dressing on Dad’s surgical site and said that Dad’s scar was healing nicely.

Dr. Hunt added that Dr. Garland from hematology/oncology had left a note in Dad’s chart, recommending that they stop giving Dad blood thinners. Evidently, the doctors were unable to determine if Dad had developed heparin-induced thrombocytopenia (HIT). This issue about blood thinners and HIT was frustrating, and it seemed like I couldn’t get a clear answer. Dad had a blood clot in his neck, he seemed to need a blood thinner during dialysis, and he had AFib, yet the doctors were withholding blood thinners. When Mom had a bleed that was most likely caused by Xarelto, the cardiologist just about had a conniption when the neurologist stopped her blood thinner. I can only surmise that every case is different and I shouldn’t try to apply a universal solution to an individual problem.

During Dr. Hunt’s visit, Dad slept like Sleeping Beauty and we could not rouse him. After the doctor left, I decided to get some coffee from the cafeteria to see if that would help keep Dad awake, but I couldn’t wake him enough for him to take a sip. I tried yelling at him and clapping my hands next to his ear, but nothing worked. I found this deep sleeping troubling. We had experienced challenges waking him during his hospital stay in 2015 that turned out to be nothing, but it still made me uneasy.

At 10:30 A.M., Amanda removed Dad’s heart monitor in preparation for his MRI. Because Dad was still sleeping soundly, I assumed that he would be easy to move and would be still throughout the imaging. However, moments later, the door opened and Sharon and Jim, two of my parents’ neighbors, walked into the room. As soon as Sharon said hello, it was as if a switch turned on inside of Dad’s head. Not only was he awake, but he was also alert with moments of clarity. I jokingly asked if they could stay at the hospital with us. During both of Dad’s hospitalizations, he would instantly transform from a confused state or wake from a deep sleep when my parents’ close friends entered the room. I never had a chance to ask anyone about it, but I wondered why friends might have a greater impact on Dad than his immediate family. Their visit with Dad was cut short when the transportation team transferred Dad out of the room for his MRI.

Mom and I visited with Sharon and Jim in the 6 North waiting room for about 45 minutes. When they left, Mom and I decided to wait for Dad in his room. As we entered his room, it sounded like we entered a room full of crickets. That familiar sound meant that Dad’s hearing aids were somewhere in the room, and near each other, and generating a lot of feedback. I eventually found them in the drawer of the bed tray and plugged them into their charger, which stopped the aggravating noise. Aspen later told me that as they were moving Dad from his room, she suddenly remembered Dad’s hearing aids and stashed them in the drawer for safekeeping.

Dad was still awake when he returned from his trip to the x-ray department. Moments after Aspen had him resituated in his bed, his lunch tray arrived. I was relieved that for once he would be able to eat a meal while it was hot. But as luck would have it, Angie and Judy from physical therapy arrived within seconds of the food tray. The hospital had its pecking order of providers and services at the hospital, and so did I. For me, physical therapy trumped food trays, so Dad would enjoy a lukewarm lunch after physical therapy.

The physical therapy team quickly got Dad sitting up on the side of the bed. Before they tried to have him stand, Angie hooked up his heart monitor while Judy adjusted the height of his walker. On the count of 3, they helped Dad stand up. He was still a little bent, but he stood up straighter than he had during his previous session. To help him stand straight, they had him look straight ahead at the large picture on the wall. Angie was able to get him to stand on his left foot and lift his right foot off of the floor. A few minutes into the session, they had a bit of a challenge getting Dad to keep his eyes open. I found it amazing that he could fall asleep during a physical therapy session. After Angie regained his attention, she had him stretch out his shoulders, and then she let him sit down on the side of the bed. After he rested for a few minutes, she had him stand up and then step to the left and then to the right, picking up his feet as he moved. Before they let him sit down again, he marched in place, albeit very slowly.

When he was back in bed, they had him lift each of his legs. Angie said that he did fine, but tomorrow she would like to see him lower them with more control (versus plopping them down on the bed). Because of his severe fluid overload condition before he entered the hospital, he would not have been able to lift his legs. Mom often had to lift his legs onto the bed at night. During this hospital stay, Dad had had several liters of excess fluid removed during his four dialysis sessions. His legs were now much leaner and lighter. I was glad that Mom was here to witness this good session. I had been disappointed that she had missed his first session with physical therapy.

After the therapists left, I was able to help Dad eat some warm soup and mandarin orange segments before the transportation tech arrived at 12:35 P.M. to take him to dialysis. Unless a problem occurred, dialysis sessions lasted about four hours. I assumed that Dad would not return to his room before 5:00 P.M.

After Dad was transported from his room, Mom and I ate lunch in the hospital cafeteria. Under normal circumstances, we would have returned home for a couple of hours, but Mom had an afternoon appointment with her cardiologist, whose office was on the first floor of the hospital.

Shortly before 2:00 P.M., David, the case manager, stopped by Dad’s room with a list of names of rehab facilities. Before Dad could safely return home, he would need a week or two of intensive physical and occupational therapy. We knew that we didn’t want to use Cornerstone, which is where he stayed following his previous surgery. The Brookdale Meridian, which is located less than three miles from my parents’ home, was Mom’s only choice. David wanted us to choose a couple of places, but we asked him to see if this one was available, and if not, we would choose another facility.

As we were walking to Dr. Ebert’s office at 2:30 P.M., my mobile phone rang and it was Jean from the Brookdale Meridian. She had a couple of questions about Dad and his possible checkout date. She also asked if I had any questions. If their care was anything like their responsiveness to new-patient referrals, Dad would be in good hands.

Mom’s visit with Dr. Ebert was basically routine, and she left this appointment with the medication refills that prompted her to make the appointment. Dr. Ebert is also Dad’s cardiologist, and she had many questions about his current status. I had contacted her before one of Dad’s appointments to inform her about his fluid overload condition, and she had tried to reinforce much of what I had been telling him about the consequences of his condition, with little or no effect.

When Dad returned from his dialysis session at 5:15 P.M., he was still wide awake. According to Aspen, he had the dialysis nurse call the nurses’ station a few times to see if his wife was OK. Usually, Dad sleeps through dialysis, so Mom and I were surprised to see that he was awake and alert when he returned. I marveled at the change in him since this morning.

After Aspen changed Dad’s gown and linens, I helped Dad with his dinner. I noticed that it seemed to take him a long time to swallow. When I asked him if he was having trouble swallowing, he said, yes, a little bit. I gave him a few bites of turkey and gravy, beans, and he drank a little Nepro. When it seemed that it was taking him a long time to clear his throat, I asked again if he was having trouble swallowing and he said, yes. When I asked him to explain about the trouble that he was having, he started snoring, putting an end to our conversation and his dinner time. By now it was 6:45 P.M., and Mom and I were tired and ready to go home. On the way out, I quickly explained Dad’s situation to Aspen. When I got home, I texted Adan and expressed some concern about Dad’s problems with swallowing. He responded and said that he would stop by in the morning to check on Dad.

Dad’s days were such a mixed bag. The day could start bad and end bad with intervening good hours, or any combination of good and bad periods. I was frustrated that we couldn’t seem to get one solid good day.

Little victories and setbacks during recovery

Published on January 2, 2019December 31, 2018 by mellowdee55Leave a comment

August 29, 2018. Before going to bed last night, I had washed a load of clothes and then placed them in the dryer with the intention of drying them in the morning. When I woke up at 4:00 A.M. this morning, I was pleased that I remembered the wet clothes, and started the dryer. Life’s little victories seemed important these days.

When Mom woke up at 6:00 A.M., she said that she was exhausted and that she was frustrated that she didn’t have time to do anything around the house. Last night, Stan and I had talked about trying to get Mom to stay at home and rest, so I took this opportunity to suggest that she stay at home this morning, and I would bring her with me to the hospital after lunch. She gratefully accepted my offer.

I arrived at Dad’s room shortly before 7:45 A.M. He was sleeping, but he was easy to wake. After saying hello, he told me that there had been about 15 people in the room overnight, which seemed implausible to me. I later learned from his night nurse that Dad had triggered his bed alarm by getting out of bed, and when she got to the room, she found him on the floor in a “praying” sort of position, probably trying to get back into bed. She had to call for assistance to get him back into the bed, but I doubt that the task required 15 people. However, keeping Dad in bed had proven to be one of life’s most difficult challenges. Thank goodness he didn’t injure himself.

Dr. Tanner, one of the nephrology residents, stopped by this morning and confirmed what the nurse had told me yesterday afternoon. Because of Dad’s low blood pressure, they were unable to remove more than 500 ml of fluid yesterday during dialysis. He said that they were going let Dad’s body rest today and perhaps try another dialysis session tomorrow. Wasn’t it just yesterday that I had prayed that Dad could maintain enough blood pressure to keep removing this excess fluid?

After Dr. Tanner left the room, someone from the food & nutrition department dropped off Dad’s breakfast tray. It was a messy process, but with some assistance from me, he ate about half of the food on his tray. The linen cart for our section of 6 North was conveniently located across from Dad’s room, and the nurses told me that I could use it. Before Dad started eating, I grabbed a bath towel and used it like a large bib, which saved me and the nurses a lot of clean-up time. I was happy to see that in the last couple of days, he had graduated from receiving Nepro through a feeding tube to a tray containing oatmeal, an omelet, an English muffin, a carton of Nepro, milk, and coffee. As nervous as I was about his status, I had to admit that his condition had improved a lot in the past five days.

At 10:00 A.M., I used the call button to summon the nurse. Once again, Dad had slid down the bed and needed to be repositioned. While Aspen, the nurse, was there, I asked her if she had seen the doctor or his PA or any of the therapists. I didn’t want to risk missing any of them by leaving for lunch at the wrong time. Aspen replied that she had not seen any of the providers this morning. I spent the next hour trying to engage Dad in some sort of meaningful conversation while he drifted in and out of sleep.

At 11:00 A.M., Katherine, the occupational therapist, arrived. She had barely started getting information from Dad when Amber, the physical therapist, and her student, Shelby, arrived. The room became a hubbub of activity when the nephrologist also arrived. It was positively uncanny how all of the care providers seemed to arrive at the same time. Thankfully, the nephrologist stopped by, only to confirm what Dr. Tanner, his resident, had said earlier. I was glad that his visit was brief. I was eager for Dad to get started with his physical and occupational therapy.

Within moments of the nephrologist’s departure, a knock at the door announced the arrival of Pastor Tom. When he entered the room, he looked at Katherine and said, “Hi, sister.” It seemed that Katherine was also a member of my parents’ church. I know that it doesn’t make any difference in a person’s care, but I always felt better when I was able to make a personal connection with the health care provider, so Pastor Tom’s visit seemed fortuitous. Pastor Tom stayed only long enough to exchange enthusiastic greetings with my father. Although he was there for only a couple of minutes, seeing him always acted like a shot of adrenaline for Dad, which was just what was needed at that moment.

Amber and Shelby were able to get Dad to sit on the side of the bed. While he sat on the side of the bed, Katherine exercised his arms and checked his toes and legs. Katherine and Amber then worked together to get Dad to stand up, with me cheering him on from across the room. By 11:20 A.M., Dad was exhausted and ready to lie down.

As the occupational and physical therapists were getting Dad resituated and comfortable in bed, Adan, the speech therapist, entered the room to ask if Dad had been receiving his food trays. I told him that the breakfast tray was great, but I questioned the wisdom of giving Dad rice for dinner last night. He agreed and said that he would modify Dad’s diet to dysphagia III so that his trays would not include loose foods like rice. When I asked him if he knew anything about Dr. Hunt, who was starting his week-long rotation today, he said that he thought that the doctor was cool.

So far, I’d seen everyone today that I wanted to see, with one exception: I had not seen Dr. Hunt. However, it was now 11:40 A.M., and I needed to get home for lunch. After a quick lunch, Mom and I returned to Dad’s room at 12:50 P.M. When I reached out to touch his right arm, I noticed that his gown was damp on his right shoulder. When I mentioned the damp gown to Aspen, she said that while I was gone, they tried to give him a pill and some water had spilled on his gown. I don’t know if I could swallow a pill while slumped down in bed, especially if I was in a groggy and confused state. I didn’t question her more, but I assumed that he was able to swallow the pill.

Shortly after 1:30 P.M., Dr. Hunt arrived and began to summarize Dad’s current condition. During his summarization, he mentioned the presence of a blood clot in Dad’s neck, which was new news to me. I knew that he was receiving a blood thinner, but the doctors had only mentioned the likelihood of platelets clotting as the reason for giving him a blood thinner. Doctor Hunt mentioned that he had requested a consult with hematology/oncology to help him determine if Dad had developed an intolerance to heparin or not. He also said that he didn’t want Dad released from the hospital to a rehab facility until we had established a baseline for his kidneys and weight, and a baseline for his mentation. He wanted to know if neurology thought that his confusion was a permanent or transient condition. Because Dad had fallen last night, the doctor wanted to ensure that Dad had not fallen on his head. For that reason, he ordered a CT scan. I was skeptical about the need for the neurology consult and the CT scan. Usually, when Dad fell out of bed, his fall was more like a slide that started with his feet. The cynic in me thought that all of these consultations and tests were ways in which to inflate the hospital bill. As long as the tests didn’t harm or hurt him, I reluctantly agreed with the doctor’s suggestions.

Within the hour, a gurney appeared outside of Dad’s room, and he was transported to the x-ray department for his CT scan.

At 3:15 P.M., a couple of doctors from the hematology/oncology department visited us to talk about some of the problems that Dad might be having with heparin and HIT. They said that sometimes they could substitute Argatroban for the heparin, but in Dad’s case, they thought that this drug was too harsh. Because Argatroban is metabolized in the liver, it would be too hard on Dad’s liver, which had been under stress during this hospital stay. They said that they also had been viewing Dad’s white and red blood cells under a microscope and had noticed a slight change in their shape, which might indicate the start of a cancerous condition. However, the only way that they could know for sure was to order a bone marrow test, and we all agreed that at Dad’s age, we didn’t need to go down this path. They speculated that his liver problems probably started with the sharp drop in his blood pressure the day after his latest surgery. Although his blood pressure had rebounded, it would take more than a few days for the liver to recover.

When Mom and I left at 5:00 P.M., I had some very mixed feelings about the day. On the one hand, he had started his physical therapy, and the doctor was talking about Dad’s discharge from the hospital. On the other hand, we were discussing blood clots, the possibility of a cancerous condition, and the need for a CT scan to determine whether he had sustained a head injury. Although Mom felt better after having spent the morning at home, Dad’s morning had seemed a bit more positive than his afternoon, and I was sorry that she had missed it.

Out of ICU, but not the sort of day we had envisioned

Published on December 26, 2018January 12, 2019 by mellowdee551 Comment

August 28, 2018. Mom and I arrived at the hospital at 8:00 A.M. This was Dad’s first day out of the ICU, and we were optimistic about the day. When we arrived at room 634 North, Dad was sleeping, and I thought that he looked terrible. His face was more swollen than I had ever seen it. Also, I was concerned about his coloring, so I wondered about his oxygen saturation. We were able to wake him, but he kept dropping off to sleep in mid-sentence. His oxygen mask had been removed, and I didn’t know if he kept dropping off to sleep because of low oxygen, fluid overload, or if he was just naturally sleepy. He complained of constant interruptions during the night and said that someone had come into his room this morning, but I was never sure if he was remembering dreams or reality.

At 8:15 A.M., Conner, Dad’s nurse, entered Dad’s room for the first time since the shift change at 7:00 A.M. Following our introductions, she accessed Dad’s chart and told us that Dr. Jennifer Moran, the attending physician for 6 North, had asked for someone in Orthopedics to look at Dad’s surgical wound vac. It had been in place for more than five days, and it seemed to the doctor that it might be clogged. When I asked her if Dad was scheduled to receive physical therapy, she said that only speech therapy was on his schedule, but she would ask for physical or occupational therapy today.

When I asked if he was scheduled for interventional radiology (IR) to have the clog in his fistula removed, she confirmed that he was on the IR schedule for 1:00 P.M. today. With the IR appointment scheduled for the afternoon, I was fairly certain that Dad would not receive dialysis today. However, his ability to receive dialysis hinged on whether or not IR could clear the clog in his fistula.

I had barely finished speaking with Conner when someone from the Transportation team arrived to take Dad to IR. I should have learned a long time ago that schedules in the hospital were fluid and much like those of remodeling contractors. To help the Transportation aide prepare and move Dad to the gurney, Conner summoned Miguel, Dad’s aide (CNA). I learned then that Dad had indeed remembered reality and that it was Miguel who had interrupted Dad’s sleep early this morning.

Because someone had to sign a consent form before IR could perform the procedure, one of us needed to accompany him to IR. Either one of us could sign, but we both wanted to accompany Dad, who was now sleeping soundly on the gurney. We arrived at IR at 8:35 A.M. Ten minutes later, Nathan, an IR nurse took Dad’s vitals and obtained some background information about Dad from us.

One of the interventional radiologists is a member of FUMC-Temple, my parents’ church. I was pleased when I saw that it was Dr. Dollar who entered Dad’s bay. I reminded him that Dad had been a patient of his twice before and told him that Mom and I had attended his daughter’s confirmation. We joked that the pastor would give the doctor hell if the procedure didn’t go well. Before Mom and I left Dad, Dr. Dollar mentioned that because the attending physician wanted to know if Dad had Heparin-induced thrombocytopenia (HIT), they would test him for that. Because Dialysis patients usually received Heparin before and during dialysis to prevent blood clots, they could develop HIT over time. We woke Dad, kissed him, and let him know that we would be waiting in his room for him. At 9:20 A.M., Kristi, the IR surgical nurse, wheeled Dad from his bay and Mom and I found our way to the x-ray waiting room.

Mom needed to have some of her heart medicine prescriptions refilled. Unfortunately, her primary care physician who wrote the prescriptions had recently retired. I thought that Mom’s cardiologist should prescribe all of her heart medications, and we decided to schedule an appointment for Mom to see her. Because Mom’s cardiologist works in the Scott and White Heart Center, which is located on the first floor of the hospital, we decided to spend some of our wait time scheduling an appointment.

At 10:25 A.M., Mom and I walked back to the x-ray waiting room to check on Dad’s status. We were told that they were almost finished and that we could wait there to speak with the surgical nurse. A few minutes later, Kristi, who had assisted Dr. Dollar, said that they were able to remove the clot and that he should be able to have dialysis at any time, which was excellent news. Because this procedure had been successful, Dad would not require another procedure to insert a dialysis catheter, which could have increased his odds at contracting an infection.

We arrived at Dad’s room about 15 minutes before he did and in time to speak to the nephrology team, which was making their morning rounds. They asked us if we knew the results of Dad’s procedure. When I relayed what Kristi had told us, they said that they would schedule Dad for dialysis this afternoon. I had been very worried about Dad’s apparent fluid overload condition this morning and was pleased that he would have some of that excess fluid removed today. He had had a lot of dialysis in the eight days that he had been here. I prayed that he could maintain his blood pressure until all of the excess fluid was removed.

When Dad returned to his room, Conner changed the bandages that protected his recent skin tears and took his vitals, which were great. She also said that she would remove the annoying wound vac that had been left on by the orthopedic surgery team. It didn’t seem to be helping Dad’s situation and was just another annoyance for him.

Mom and I left for lunch at 11:30 A.M. so that we could get back to Dad’s room before he went to dialysis at 1:00 P.M. However, when we arrived at Dad’s room at 12:45 P.M., he was already gone. At 1:00 P.M., Conner stopped by Dad’s room. She told us that she had just returned from accompanying him to the dialysis room, and would be glad to take us there so that we could be with Dad. I had a deadline to attend to and opted to stay in Dad’s room while Mom went to sit with Dad.

At 2:30 P.M., Mary, a hospital pharmacist, came to Dad’s room to ask me about his at-home medications. She wondered if Dad was using more than one pharmacy because most of his medications had not been refilled in quite some time. I found this news disturbing, yet not surprising. Dad often (defiantly) said that he was not taking his medications. There was one, Renvela, that I hoped that she would find had been refilled at the Veteran’s Administration Hospital, but I wasn’t holding out much hope.

At 3:40 P.M., Dr. Potter and Dr. Murdette stopped by to check on Dad’s fistula. Dr. Potter is Scott & White’s new transplant surgeon and had replaced Dr. Gregory Jaffers, who had recently retired. The transplant team performs the fistula surgery, and Dr. Jaffers had performed Dad’s fistula surgery in 2016. Dr. Potter said that he had been in surgery all day and hadn’t had a chance to see Dad and had hoped to meet him. I assumed that Dr. Potter had heard about the clot in Dad’s fistula and thought that he should meet him should he have to repair the fistula. I told him that the IR procedure had gone well and that Dad was having dialysis now.

Dad and Mom returned from dialysis at 5:15 P.M. As Conner was getting him resituated in the room, she told me that they were able to remove only 500 ml from him today because his blood pressure kept dropping. After receiving that disappointing news, I asked her about the results from his latest labs, which were run this morning. It seemed that his WBC count had jumped from a normal range of 10 yesterday to an elevated 14 this morning. I was very concerned that Dad was fighting a new infection.

Dr. Moran stopped by at 6:15 P.M. I expressed my alarm at Dad’s elevated WBC count, but she didn’t think that it was an issue because he didn’t have an elevated fever and his blood pressure was good. She told me that today was the last day of her rotation. Starting tomorrow morning, Dr. Hunt would take over as the attending physician. If Dad was developing an infection, she said that Dr. Hunt would be a good attending physician for Dad; in addition to being an internist, he was also certified for infectious diseases.

Mom and I left the hospital at 7:15 P.M., tired and unsure of Dad’s status. I hoped that Dad’s uptick in his WBC count was of no concern. Mom and I were both tired, and I was now worried about her continued weight loss. She suddenly seemed frail to me and she had no energy. She also had no appetite and I could not get her to eat more than a couple of bites of dinner; however, she did eat an ice cream cone.

I had only planned for a short trip to Temple for Dad’s surgery on August 22, and I was now out of clean clothes. It seemed like my trip would be extended for some indeterminate time, so I had to wash some clothes before I could go to bed. I was tired and frustrated and capped off my evening by being a jerk and snapping at my exhausted mother.

Before going to bed, I called my husband, Stan, and updated him on the activities of the day. Before we hung up, Stan said that tomorrow would be a better day. From his lips to God’s ear.