Tale of Two Parents

Talk about your obstacle courses!

Published on February 7, 2017February 7, 2017 by mellowdee55Leave a comment

August 29, 2015. Dad’s day started around 5:00 A.M. when he was visited by Mary, a wound care nurse. The CCH wound care nurses not only tended to wounds, which you might expect, they also trimmed nails and would give Dad a shave. Neither Dad nor Mom was a fan of facial hair, so they both felt better after he received a spruce up from wound-care nurses.

When Mom and I arrived at the CCH at 7:45 A.M., Dad was sleeping. A few minutes later, the respiratory therapist woke him, finished his breathing treatment, and administered his oral care. While she was finishing her session with Dad, Dr. White arrived. He and I stepped out of the room and discussed a treatment plan for Dad that would enable him to transfer from the CCH to a skilled nursing facility (SNiF) before his hospitalization benefits expired. If we could get him into a SNiF, he could receive up to 100 days for rehabilitation therapies. When I met with Marty yesterday, she and I agreed that we would like to see him leave the CCH within a couple weeks so that he wouldn’t use up all of his lifetime reserve days of Medicare coverage.

Dr. White thought that Dad had some challenges that could prevent him from transferring to a SNiF. The doctor thought that the feeding tube would be a problem, along with Dad’s mentation and diminished strength. He also suspected that the trach tube might be another obstacle, but he wasn’t sure. He did say that based on the CT scan from yesterday afternoon, Dad’s lung condition was improving.

The doctor said that he could start the process of removing Dad’s trach tube, but he’d been moving cautiously in that regard in case they needed to intubate Dad again. I asked if Dad could start receiving swallow therapy and he said that he’d request a swallow evaluation on Monday. Dr. White said that he’d have Marty give us a list of SNiFs so that we could contact some of them to get an idea about the goals we needed to meet to transfer Dad by Oct. 1st. I told him that I’d like to aim a little higher and get him transferred sooner. He also said that Dad’s nights had been uneventful since he got out of bed a few days earlier. He also said that he would meet with Rachel, the nurse practitioner, to see if she could offer any insight into conditions that could prevent him from being admitted to a SNiF.

When I returned to his room, Dad asked to see his list of exercises. When I couldn’t lay my hands on it, he became somewhat annoyed and agitated that it was lost. I finally got him to calm down when I assured him that I’d help him redo the list.

He grimaced a lot during the morning and finally told us that his shoulder was hurting him a lot. We called for Christine, the nurse, and requested some pain medicine. A few minutes after she gave him the meds, he started complaining about sharp pains in his head. After conferring with the nurse, we suspected that the pain in his shoulder was radiating to his head. After the pain medicine took effect, he stopped complaining about pain.

Kevin from x-ray stopped by around 10:00 A.M to x-ray Dad’s shoulder. While Mom and I sat in the waiting room, I told her about my conversation with Dr. White. She didn’t want Dad to go to a SNiF, and said that she and Dad had promised each other that they would not institutionalize each other. I hadn’t expected this response. A good friend of hers had checked herself into a SNiF during her convalescence from hip surgery. I had no intention of institutionalizing Dad, but we were running out of hospitalization benefits and had to find a place where he could complete his recovery. I told her that not using a SNiF would mean that she would have to hire caregivers to come to the house. She probably would not be able to leave him alone if he was at the house. I was also pretty sure that Medicare would not cover this expense. She said that she didn’t care and would be willing to do what was necessary to keep him out of a nursing home. We dropped the subject for the time being when we returned to Dad’s room.

Dad was a lot more comfortable when the bed extension was on his bed. Unfortunately, when the extension was on the bed, the bed wouldn’t fit into the elevator, so most of the time, the extension sat in the corner of the room. Because the weekend afforded him a couple days without elevators, Christine attached the bed extension.

Dad fell asleep pretty fast when the pain meds kicked in, which seemed like a good time for Mom and me to slip out for lunch.

When we returned after lunch, Dad was lying diagonally in the bed. After Christine got him resituated, Dad and I spent much of the afternoon redoing his exercise routine. I had to talk him down from some of the exercises that he used to do in boot camp some 65 years ago. I hoped that he would be as gung-ho at execution as he was during planning. So far, the physical therapist could barely get him to stand up on the side of the bed.

The three of us watched some of the golf tournament in the afternoon, but Dad had received more pain medicine and he kept drifting off to sleep during our conversations. After one such dozing off at 4:45 P.M., Mom and I went home.

Mom and I continued our tense discussions about moving Dad from the CCH to Marlandwood West, which was a SNiF in the neighbor that, on paper, seemed like a great option for him. Mom still wasn’t convinced, and she was also very concerned about the upcoming week because Dr. Anderson would be returning as the attending physician. It was probably just a freakish coincidence, but nothing seemed to go well for Dad when Dr. Anderson was there. With all that we had going on, I decided to stay in Temple a little longer. Instead of going home on Sunday, I agreed to stay through 4:00 P.M. on Monday. In addition to seeing Dr. Anderson, I would try to stop by Marlandwood with Mom and check out the facility. At this point, we had been arguing about what we envisioned the environment to be like. We needed to see it first-hand.

While Mom and I were at home discussing rehab options, back at the CCH, Dad was attempting to get out of bed so that he could use the bathroom. Luckily, Andrea, the night nurse, intercepted his escape and convinced him to remain in bed. Fortunately, Dad stayed in bed for the remainder of the night.

August 30. Every morning that he was in the hospital, Dad received a briefing of sorts from the nurse about the importance of staying in bed and using the call light when he needed assistance. From what I had witnessed so far, Dad had not taken these daily briefings to heart. Truth be told, between his delirium and some of his meds, I doubted that he could remember these chats with the nurses for more than a few minutes.

Mom and I arrived at the CCH at 9:05 A.M. to find that Dad was still sleeping. We learned that Dr. White was making his rounds, but he had already been to Dad’s room. We woke Dad and eventually convinced him to wear his hearing aids and wear glasses. Glasses and hearing aids might not seem like a big deal, but wearing them wasn’t always a given with him. Stan arrived at 10:00 A.M. to spell me and Mom while we attended church.

The church service lasted 15 minutes longer than usual, so we didn’t arrive home until 12:30 P.M. We were surprised that Stan wasn’t already there, but he arrived shortly after we arrived. Dad had been asking about the finances, but they were on his computer, which I had disconnected so that I could work from his desk. When we finished lunch, Stan hooked up Dad’s computer again in case he asked me to look up some financial information for him.

After saying goodbye to Stan, Mom and I returned to the CCH at 2:00 P.M. When we entered Dad’s room, we found that Angela was in his room and Dad was partway out of the bed. I tried again to see if we could raise the fourth rail but to no avail.

We had not been able to speak with the doctor today. When we asked Carrie if she could find him for us, she said that Dr. White had left the building. We had seen him walk by several times, so either she was misinformed or he had left and had subsequently returned. Regardless, we never saw him again.

For most of the afternoon, Dad slept while Mom and I watched the Barclay’s golf tournament. I hated that he slept so much, but at least we weren’t arguing about the importance of staying in bed or why he couldn’t go home. Mom and I finally left for home shortly after 4:30 P.M.

August 31. Mom had a doctor’s appointment this morning, and when she returned, she and I drove to Marlandwood, the SNiF that was located less than three miles from my parents’ house. Like many nursing facilities, it housed rehab patients who were building back their strength so that they could safely return home. Half of the facility was devoted to permanent residents.

While at the Marlandwood facility, Mom and I visited with Stacy and Colleen, representative of the facility, about moving Dad. We weren’t wild about the semi-private rooms, but we were impressed with the respiratory therapist and the PT and OT personnel. They seemed devoted to building up their rehab patients for their safe return home and they had no qualms about any of Dad’s conditions that we raised. Mom and I were very optimistic about Dad’s situation until we returned to the CCH and talked with Rachel, the nurse practitioner. According to her, Dad could not receive offsite dialysis with a trach unless he could remove his own secretions. She also said that he would need to be able to change out his trach, should a problem arise during dialysis. She reminded me that having the four rails up on the bed was considered restraint, and a SNiF would not accept him if he had been restrained. It was a terrible conversation. I know that everyone loved Rachel, but she had never offered up anything but obstacles. We never heard a single suggestion from her to help us in our plight.

At 2:55 P.M., Holly stopped by for a bedside swallow assessment. She came armed with ice, grape juice, and pudding, but Dad totally refused to participate. I couldn’t take it for another minute. After trying unsuccessfully to get him to exert any effort, I yelled at him and left the building. By 3:05 P.M. I was in my car and on my way home. Between the numerous obstacles and his inability to overcome them, I was frustrated to the breaking point and I felt like I was about to explode. I stopped by the house to pick up my computer and drove home–fuming all the way. Once again, it seemed like Dad’s biggest obstacle was Dad.

Waxing and waning cognition

Published on January 31, 2017 by mellowdee55Leave a comment

August 25, 2015. Dad had a good night, and by “good,” I mean that he stayed in bed and didn’t try to pull out any vital devices. Dr. White thought that Dad was pleasant and could answer most of his assessment questions, but Dad’s cognition waxed and waned, depending on the time of day. The doctor said that until Dad regained some of his strength, he wasn’t going to consider red-capping the trach, let alone removing it.

The healthcare providers weren’t the only ones who thought that Dad was confused about his whereabouts. Dad thought that he was at home and Mom had to explain to him that he was at the hospital and home was where she went at the end of every day.

Another of Dad’s problems was severe protein calorie malnutrition. I felt partly to blame because I had practically insisted that they reduce his tube feeds during dialysis. I couldn’t help how I felt. There was no way that Dad could survive another aspiration event.

OLYMPUS DIGITAL CAMERA Mom had been encouraged yesterday when Dad seemed interested in signing the paperwork necessary to obtain matching funds from Shell for the Locke Academic Scholarship at CMU. Unfortunately, although he was still very interested in the scholarship, he couldn’t sign his name. Mom gave him a pen, but he didn’t seem interested in practicing, either. She thought that perhaps she could sign the form for him if they could get a notary to witness his intent and consent. Mom told the CCH chaplain of their predicament and he said that a notary public worked at the CCH. He said that he would see what he could do for them.

When she was notified about Mom’s request, Marty, from the administration office, stopped by Dad’s room and told Mom that because of Dad’s mentation problems and confusion, the CCH’s notary could not witness any signatures on his behalf. She went on to say that because finances were involved, the notary at the CCH could not notarize the patient’s document. Sometimes Marty annoyed the heck out of me. Instead of simply stating that the CCH was not permitted to notarize financial documents, she made a point of stating that Dad was not of sound mind. The bottom line was that he could have been as sharp as a tack, and they wouldn’t have been able to help my parents. I could not understand why so often the staff at this facility felt the need to go above and beyond to demoralize patients and their families.

At 1:30 P.M., Jennifer, the physical therapy assistant, stopped by for Dad’s therapy. Dad told her that other than a pain in his right shoulder, he was feeling pretty good today. He also kept mentioning to her that he had a document that he needed to get notarized. Jennifer had her work cut out for her to keep Dad focused on his exercises, but she was able to get him to finish some bed exercises and to sit on the edge of the bed. She had to use her hand to keep Dad from falling over on the bed. She wasn’t able to get him to stand up, but after he finished his physical therapy session, Jennifer and Carrie, the nurse, put Dad in a cardiac chair that they referred to as the Stryker chair. This chair was totally cool and much different from the cardiac chairs at Memorial. It had four wheels that turned independently of each other. When you pushed him in this chair, you had the flexibility of moving sideways and in circles. Unfortunately, you could also move in those directions when you were trying to move in a straight line. Today he simply sat in the chair in his room.

A couple of hours after Mom went home, and at the time of the shift change, the bed alarm sounded in Dad’s room. The night nurse, Debra, hurried into Dad’s room and found him on the floor. Evidently, he had decided that he could get out of the bed to use the bathroom. As soon as he stood up, he pretty much sat down on the floor. With the assistance of another nurse, Debra got him back into bed and reset the bed alarm to its most sensitive setting.

Less than three hours later Dad’s bed alarm sounded again. This time, Debra reached Dad’s room before he got out of bed. She reminded him again that he needed to use the call button when he needed assistance. Before leaving the room, she raised three of the side rails on his bed. Because Dad often scooted down the bed and sort of slid out of the bed through the open rail, I asked if it could also be raised. I was informed by the nurses that raising all four rails was synonymous with restraining a patient, at least in the eyes of Texas law.

Dad was able to stay in bed for the remainder of the evening.

August 26. Today marked another ominous milestone. It was the 90^th day since Dad started dialysis, which officially made him ESRD (end-stage renal disease), or dialysis dependent. The 90^th day was also dialysis day and Rebecca, his nurse, darkened his door at 7:00 A.M. and wheeled him up to the dialysis center for another eight-hour session.

When Mom arrived at the hospital at 11:30 A.M., she learned that Dad’s WBC count was down to 6.5, which was very normal. Dad’s room was empty, so she asked when the patients usually returned from dialysis. Rebecca said that he would be finished sometime between 1:00-1:30 P.M. Instead of waiting for a couple of hours in his room, Mom decided to drive over to Memorial to speak with the Scott & White SeniorCare Insurance representative. Dad was fast approaching what we were told was the end of his hospitalization insurance coverage and Mom needed to learn more about where he stood and what sort of options were available to us.

Shortly after Mom returned to the hospital she learned about Dad’s escape and attempted escape from the bed last night.

After Dad returned to his room, he asked Mom about his brothers and how many boys his middle brother, Jim, had. He also told Mom that he had been taken away to some special place. Mom explained to him that he had been having dreams and that he hadn’t been taken anywhere, except for dialysis, which was located in the CCH. After Mom clarified the confusion about Dad’s nephews, they seemed to have a more coherent conversation.

With the exception of a couple of golf tournaments, Dad hadn’t been watching any television since May 6. To catch him up on the latest political happenings, Mom brought him the Newsweek magazine that had Donald Trump’s picture on the cover. At the time, Mr. Trump still didn’t seem like he’d make it to the general election, let alone the White House.

Before Mom left for the day, Pastor Don stopped by for a visit. He always seemed to instinctively know when to stop by and cheer up my parents, and he provided the perfect end to Mom’s day at the hospital.

August 27. The blood test results that I used to live by now seemed to be hanging out in the normal zone. You’d think that I would have started to exhale, but I was still very worried about the infection that seemed to lurk in his lungs. It didn’t help matters much that Dr. White had requested another consult from infectious diseases. We hadn’t seen Dr. Sangeetha Ranganath for a few weeks. Mom didn’t catch everything that the doctor said, but Mom did hear that she changed Dad’s antibiotic.

A few days earlier, Dad had had me write down 16 exercises that he planned to perform to build up his strength. Before I returned home to Houston, he had instructed me to leave the list of exercises in his room where he could find them. He seemed months away from being able to perform any of the exercises, but when Jennifer stopped by today for his physical therapy session, he was fixated on them. He kept telling Jennifer that he wanted her to find the exercises for him to complete. She finally was able to redirect him to the task at hand and got him to perform some of the bed exercises, but he flat out refused to perform sit-stands or sit in the chair; in fact, he insisted on getting back into bed. She and Mom both tried to explain how these exercises were important for building his strength, but their pleas fell on deaf ears. Who knows; maybe he wasn’t wearing his hearing aids. Mom was very discouraged. She and I were desperate for Dad to build up his strength, yet he seemed unwilling to participate.

The hospitals were starting to take a toll on Mom. During the past month, she had developed a cough that she couldn’t seem to shake. The danged place was always cold, and she and I kept sweaters in Dad’s room. Throughout the day, she popped cough drops to soothe her throat.

August 28. I drove to Temple this morning and arrived at my parents’ house while my father was still on dialysis. Mom and I met briefly with Dr. Heath White before Dad returned to his room. The doctor said that he had met with Dad earlier and he seemed to be feeling pretty well today. As usual, he mentioned Dad’s waxing and waning delirium, but he also mentioned that his WBC count was holding steady at 6.5. Dad was a little late returning to his room because he had been scheduled for a chest CT scan immediately after dialysis.

The doctor recommended that they replace Dad’s nasal feeding tube with a PEG, which is inserted into the stomach through the abdominal wall, rather than the nose. My father-in-law had had a terrible experience with the PEG, which heavily influenced me to avoid it. I also was concerned with my father’s penchant for pulling out vital invasive devices. Pulling out a nasal tube is one thing; pulling out a PEG would be something far more serious. We told Dr. White that we would consider his recommendation. He was now the third doctor who had recommended this procedure. I surely wish that we had gone the PEG route during his initial stay in Memorial. Perhaps he wouldn’t have aspirated if he had had a PEG. We’d never know, but I had my suspicions.

Dad seemed to be in good spirits when he returned to his room. I hadn’t seen him for several days, and he seemed glad to see me again. We spent a few minutes catching up on the past week, but our conversation deteriorated into a discussion about him leaving. No matter what Mom and I said, he couldn’t understand why he couldn’t go home today.

I decided to leave the room for a few minutes and stopped by the business office to talk with someone about Dad’s remaining benefits. I knew that Mom had spoken with them while I was in Houston, but I was still confused about where we stood and what our options were. Marty was available and she explained that Dad had 35 more days of hospital coverage. She also explained that we would be able to get 100 days of coverage from a skilled nursing facility (SNiF). Other than the fact that I knew that one of my cousins had been in a SNiF, I didn’t know much about them.

Shortly after I returned to the room, Jennifer stopped by for a physical therapy session with Dad. He greeted her by telling her that he felt that he could stand and sit in the chair in his room, versus the cardiac chair. However, she hadn’t been in his room very long before he started complaining of fatigue, which was common for dialysis days. He also told her that he wanted to go home today. Although patients usually get into the Stryker chair from a lying-down position, Jennifer said that she would show Dad how he could stand and pivot into the chair from the bed. Dad felt that he was up to the task and was surprised when he couldn’t do it. Jennifer tried to use his failure to complete the task as a teaching moment about the importance of physical therapy, but I didn’t think that it did much good. She was able to transfer him to the chair after she put a gait belt on him.

Dad stayed in the chair for the remainder of the afternoon. Considering how dialysis usually saps his strength, he was having a pretty good afternoon. While he was still in the chair, the respiratory therapist stopped by and said that his breathing had improved and that they probably would not need to put him back on CPAP tonight.

Around 4:00 P.M., I called for Michelle, his nurse, to help move him back into bed. Dad had had a full day and was starting to get tired. Except for the few tense minutes of discussion about leaving, we had had a pretty good day. Mom and I left the hospital hoping that Dad would sleep well.

So much for that great start

Published on January 24, 2017 by mellowdee551 Comment

August 21, 2015. Dad’s day got off to an exciting start at 1:30 A.M. when the central monitor alarm sounded, indicating that Dad’s heart had stopped. Dad’s nurse and the charge nurse rushed into Dad’s room and found him to be very agitated. He had disconnected all of his leads and had removed his central line dressing. When the nurses explained to him that they needed to replace the leads, he struck one of them and refused to have his leads and dressing replaced. They tried to convince Dad about the importance of monitoring his heart rate and keeping his central line covered to prevent infection. Dad would not cooperate with the nurses and demanded to speak with the doctor. The nurses contacted the on-call physician and the staff nurse, both of whom came to Dad’s room. Dr. Henry, the on-call doctor, sat with Dad and talked with him for about 30 minutes. During that time, Dr. Henry told Dad that if he continued to pull out wires and lines, they’d have no choice but to restrain him. To that threat, Dad said, “Well, I’ve been restrained before.” They sedated him, put him back on CPAP support, and he eventually went back to sleep.

Today was dialysis day, so Mom and I spent the morning at home doing chores and picked 284 tomatoes from the vegetable garden. We had picked so many tomatoes this summer that Mom and I were eating tomato sandwiches every day—sometimes twice a day. We arrived at the CCH at 12:30 P.M. and encountered Dr. Smith in the lobby. He told us about how Dad had acted out overnight. He said that Dad’s MRI was not normal, but added that the MRI for an 86-year old was not normal anyway. Because the MRI wasn’t conclusive, the doctor didn’t know whether Dad’s acting out was transient or permanent. Although they could sedate him at night while he was on pressure support, they really couldn’t sedate him when he was off the ventilator. What was disturbing about last night’s event was that Dad was lucid and that he knew that he was in the hospital. Dr. Smith said that Rachel, the nurse practitioner, was working for the next couple of nights, so he’d have her check in on Dad.

Regarding my request to have the tube feeds suspended during dialysis, Dr. Smith said that Dad’s feed rate had been reduced to 10 ml per hour during dialysis, which was a compromise between what I and Dad’s dietitian wanted. The minimal tube feeds probably weren’t in Dad’s best interest, but Dr. Smith understood my fierce concern about reducing the risk of aspiration.

During dialysis, Dad didn’t seem to exhibit any of the distress or agitation that he exhibited five hours earlier. Susan, the dialysis nurse, remarked that Dad had been very talkative during dialysis and told her about his cardiac history.

When I spoke with Dad’s nurse, Cassie, she told me that Dad had remembered her and said something like, “Long time, no see.” She said that some of his conversations would be lucid and then he would drift off to some other topic. She said that he mentioned something about seeing “Dorothy” and someone else, but Mom and I couldn’t think of who that might be. After hearing that he had also spoken about being at Jim’s house, Mom and I assumed that he was speaking about his brother, Jim, and Jim’s wife, Dora. Both Jim and Dora had been deceased for a few years.

Cassie also said that she’d check to see if Dad could be scheduled for Seroquel at night. Before I left for Houston, Cassie told me that his WBC count was 9.0, which was normal. As least something was normal.

I headed home for Houston with a heavy heart. I had been so optimistic last evening and now I was pretty concerned. Not only did he seem to be a totally different person, it now seemed as if Dad was his biggest threat to his own recovery.

Susan, the physical therapist, stopped by during the late afternoon to assess Dad’s condition and set up his goals. Dad’s strength had continued to weaken and his balance was impaired. His first goal was to be able to transfer from the bed to a chair.

Shortly after Susan left the room, Chris, the occupational therapist arrived to perform his assessment and establish goals. Unfortunately, Dad needed to progress with his physical therapy before he’d strong enough to work with the occupational therapist.

By the time Mom arrived home from the CCH and called me, I was at home in Houston. During the day, when Dad was asked where he was, he replied that he was at Walt’s house or maybe Jim’s house. Mom had to tell him that both of his brothers had been dead for several years. During their conversation, he brought up the subject of using the bathroom. During their bizarre conversation, it became apparent to Mom that Dad thought that you used the bathroom by getting on a table. When Mom explained that a table wasn’t involved, Dad wanted to know how it worked. Mom explained about toilets, and she had to spell the word. He proceeded to refer to toilets with a French accent. When they finally got off of that subject, Dad expressed an interest in getting into a wheelchair and going outside.

Fortunately, Dad had an uneventful night and didn’t require any restraints.

August 22. At 9:05 A.M., Cassie, Dad’s nurse, entered Dad’s room to find that he had decannulated himself. Just the thought of it made me queasy. Cassie called for the respiratory therapist, who reinserted his trach tube. This made two days in a row that Mom was greeted with a distressing update from Dr. Smith as she entered the CCH.

When Mom entered Dad’s room, Dad was sleeping, and he slept until 3:00 P.M. When he woke up, the respiratory therapist replaced Dad’s speaking valve. As was so often the case, the conversation turned to the subject of the bathroom. Dad insisted that all he needed was two strong men and he could get out of bed and use the bathroom.

After Mom left for the day, Dad stayed on the trach collar until 7:30 P.M. It seemed that Dad had another uneventful night. I didn’t know if he was tired from dialysis and physical therapy or if he was under the influence of his antipsychotic medications, but he slept through the night. At this point, I didn’t care why he slept. I just wanted him to get through the night without hurting himself.

August 23. Sundays at the CCH were pretty uneventful. There was no dialysis or therapies and you didn’t see the doctors after the morning rounds unless there was a problem. You’d think that the parking lot would be full of cars, but the CCH wasn’t teeming with visitors. The place seemed empty, dark, and depressing. The doctors at Memorial had told me on more than one occasion that a primary reason for transferring Dad from the ICU to the CCH was so that he could be exposed to more light. These rooms had small windows and even with all the light on, the rooms still seemed dark.

After Mom attended church, she stopped by the CCH to see Dad. He seemed to be in pretty good spirits and wanted to talk to me. Shortly after I had eaten lunch, I received a call from Mom. She handed her cell phone to Dad. He and I tried to talk, but he couldn’t hear me very well. It seemed that he wasn’t wearing his hearing aids, so he handed the phone back to Mom. I was happy to hear that he had had an uneventful night and that the day was going well for him.

August 24. Dad’s day started with dialysis. He was starting to become confused about where he was during dialysis and it often seemed to him as if he was leaving the building or going through a series of tunnels. The trip to dialysis was actually a trip down a short hall and an elevator ride to the second floor. On this day, they removed 2,300 ml of excess fluid during dialysis, which reduced his weight from 152.9 to 144.5 pounds. On May 6, he entered Memorial weighing 161 pounds, which was a reasonable weight for a 6’1” adult male. He seemed like a shadow of his former self.

As we had been told before Dad’s transfer from Memorial a few days earlier, Dr. Heath White was back at the CCH as the presiding physician. He had now been the presiding physician for my mother during her hospitalization and for my father at each admittance at Memorial and CCH. He probably felt like we were stalking him. Dr. White found Dad to be pleasant, but confused. Dad’s WBC count was now 6.6, which was very normal and considerably lower than it was the last time that Dr. White had seen Dad and predicted his death.

Dialysis leaves most dialysis patients tired, and Dad was no exception. When Jennifer, the physical therapist assistant, stopped by at 3:30 P.M., Dad was too tired to participate. Mom asked if they could make sure to stop by on days when he didn’t have dialysis.

Cayaana, Dad’s night nurse, found Dad’s mentation to be somewhat impaired. During the start of her assessment, he seemed to be aware of his whereabouts and his situation, but after about 30 minutes, she found that she had to remind him about where he was.

Dad’s mentation problem could be challenging and was raising concerns for Mom. In particular, in honor of my mother, my father had been funding a scholarship for outstanding political science majors at Colorado Mesa University. Shell, my father’s employer for 30+ years, matched my father’s contribution. The deadline for submitting the application for 2016 was approaching. Before she left the CCH for the day, my mother mentioned the deadline to Dad. Mom was pleased to see that this topic sparked a few moments of clarity and he said that he would sign the application tomorrow.

Fortunately, his night was uneventful and he did not require restraints.

Leaving Memorial again. Back in the CCH again.

Published on January 17, 2017 by mellowdee552 Comments

August 20, 2015. As Mom and I drove to the hospital, we realized that today would probably be Dad’s last day at Memorial. We were glad that he had recovered enough to leave Memorial, but we had reservations about the CCH. Except for a couple of cases (good people we had encountered), our feelings about the facility were not positive.

Mom and I arrived at Dad’s room at 7:40 A.M. to find Dad’s legs halfway out of the bed. His nurse, Pam, got him back into bed and then called the doctor about Dad’s delirium. I wiped Dad’s eyes with a warm washcloth, and Pam gave him some Fentanyl, an opioid pain medication, in his feeding tube.

Janie, the respiratory therapist, administered a breathing treatment of Albuterol, followed by oral care. Dad signaled that he wanted the speaking valve now, but he’d been having some difficulty breathing, so he had to remain on CPAP. Janie said that she would move him over to the trach collar around 9:15 A.M. to see how he managed.

Dr. Brett Steven Ambroson stopped by and said that the infectious diseases specialist had recommended a couple of antibiotics for the next few weeks, but added that Dad would probably be on some sort of antibiotic for the rest of his life, or until the antibiotics eventually did no good. Gad.

blogpills Pam said that she spoke with the doctors about Dad’s delirium, and they wanted to fully vent him at night and had ordered an extra dose of Seroquel for him during the day, along with more Fentanyl. She said that the extra meds were ordered because of Amanda’s claim last night that Dad had hit her. This claim bothered me. It might seem like I was splitting hairs, but Dad had been struggling with the group of nurses to keep from being tied up. During the flailing of his arms, she was struck. He did not deliberately strike her. Mom and I were in the room and we saw what happened, and we didn’t realize that anyone had been hit during the ruckus. It was only when they had finally restrained him that one of the nurses said that he had hit it.

Dr. Stewart stopped by to talk with us about Dad’s situation, including the recommendation to fully vent him at night and then wean him off of the vent so that he could get more rest and get back onto the day schedule for the trach collar. He said that the doctors at Memorial would recommend stopping the Seroquel and replacing it with a pharmacy-grade Melatonin, known as Ramelteon. He said that they had had good results with it at Memorial and hoped that the CCH doctors would want to continue it.

At 10:20 A.M., Michelle, the dietitian, stopped by for a routine visit to see if Dad’s nutritional needs were being met. I had sort of a love/hate relationship with this very nice woman, which had more to do with the tube feed than her. Because Dad had aspirated on his tube feed during dialysis, I asked if he could have the tube feed suspended during dialysis. She wasn’t wild about that suggestion because Dad would be in dialysis for about 12-15 hours each week and the nutritional loss for him could be significant. She said that she would speak with her counterpart at the CCH to devise a nutritional plan for Dad. Since her last routine visit with Dad, he had received about 90% of his daily nutritional goals. As she had done during her previous visit, she also recommended the addition of probiotics and fiber to Dad’s diet.

Dad’s DNR order was not valid outside of the hospital, so Mom had to sign a new one for the ambulance ride from Memorial to the CCH. We didn’t expect anything to go wrong, but it still gave me the willies to sign this document and then send him on his way. We had one final visit with Dr. Ghamande and his team. He pretty much repeated what Dr. Stewart had told us earlier. He also mentioned that Dr. White would be the presiding physician at the CCH next week.

At 11:37 A.M., Janie returned to Dad’s room and moved him back to the trach collar in preparation for his transfer to the CCH.

emts_aug_blur Five minutes later, the EMTs arrived to prepare Dad for the trip back to CCH. Because the cuff was deflated on his trach collar, Dad was able to chat with the EMTs without a speaking valve. He seemed to be in good spirits and didn’t exhibit any agitated behavior. The EMTs’ preparations were finished in less than 30 minutes. As they started pushing Dad’s gurney out of his room, Dawn rushed into the room with Dad’s speaking valve and installed it on his trach.

Mom and I arrived at the CCH at 1:05 P.M. and sat in the waiting room for about 20 minutes before we could go see Dad. When we arrived in Dad’s room, we found him chatting amiably with Dr. Randall Smith, our favorite doctor by far. It seemed as though Dr. Smith was conducting a getting-to-know-you type of interview, but he was actually trying to assess Dad’s cognition. Before he left the room, Dr. Smith said that he was going to request a PT assessment for Dad today and have Speech Therapy get started on swallow therapy. We were so glad that Dr. Smith was the attending physician, if only for three more days. Mom and I finally went home for lunch around 1:15 P.M., and I started working online from home at 1:45 P.M.

Mom returned home from the CCH at 5:15 P.M. During the afternoon, I had inadvertently downloaded a virus from a training website and was now being held captive by one of our IT techs while he tried to fix my computer. I was eventually able to tear myself away from my terribly unproductive day and eat dinner with Mom.

We arrived back at the CCH at 7:05 P.M. Dad seemed to be enjoying his speaking valve and was speaking with a clear and strong voice. In that strong voice, he wished for a pair of tiny scissors that he could use to cut his restraints at night. In my perfect world, he wouldn’t have needed the restraints.

Gary, the respiratory therapist, arrived at 7:45 P.M. and administered Dad’s Albuterol nebulizer treatment and trach care. The treatment lasted for several minutes, during which Dad could not talk. As soon as Gary removed the nebulizer device, Winnie, the night nurse, arrived to administer the evening meds. Within a few minutes, Dad started drifting off to sleep. He had had a full day, full of non-stop talking for the past seven hours. We left the CCH feeling pretty confident that he would have an uneventful night and a good night’s sleep. Dad’s latest stay had gotten off to a pretty good start, and Mom and I were feeling much more optimistic about his return to the CCH.

He speaks! At last.

Published on January 10, 2017 by mellowdee551 Comment

August 18, 2015. Mom and I arrived at the hospital at 7:40 A.M. to find that Dad was sleeping and unrestrained, which was a nice change. I spoke briefly with his nurse, Pam, and learned that his WBC count had inched up again to 13.3. I hoped that we would learn something about the results of the BAL test on Dad’s secretions. I woke him and wiped his eyes and face with a cool cloth.

At 8:30 A.M., the wound care team stopped by to assess Dad’s various sores, including a new blister that had just developed yesterday on his right hand. The constant repositioning of Dad by the nurses annoyed Dad but was supposed to reduce the likelihood of bed and pressure sores. I can’t imagine what his condition might have been like without the constant movement. Janie, the respiratory therapist, stopped by at 9:15 A.M. and moved him from CPAP support to the trach collar. She said that the doctor wanted to see whether Dad could handle an eight-hour trial today.

Dad had a moment where he indicated that he was getting out of bed. I wasn’t sure whether he needed the bathroom or just wanted out of the bed. I persuaded him to remain in the bed. My father had always been very focused on completing tasks and achieving goals. This character trait seemed to be amplified in his delirious state. Since his first stay at the CCH, he had been intent on getting out of bed to use a proper bathroom. Unfortunately, accomplishing this goal was not possible at this time, and reminding him of that reality was my daily task.

Around 10:45 A.M., Mom left the hospital to run some errands. We still hadn’t seen the doctors, but we had heard that the MICU had a full house. Also, they seemed to assess patient condition on a curve. If your condition was less critical than the other patients, then you might not see the doctors until early afternoon. We couldn’t find fault with this convention, but it made any sort of planning difficult.

Dad had been coughing up a lot of thick yellow secretions today and seemed to be pretty sleepy and confused. I was concerned that he might be battling some new, or recurrence of an old, infection. At one point he asked me to explain about the bathroom and review what would be happening today.

At 11:15 A.M., the machine that provided oxygen aerosol support for the trach collar stopped making its usual working sounds. The equipment problem didn’t seem to create any breathing problems for Dad, but Pam said that the oxygen line had popped off. Aside from the lack of sound, Dad didn’t realize that anything was wrong. After Janie, the respiratory therapist, arrived, she performed a little maintenance on the machine and provided a little trach care on Dad, which reduced his secretions somewhat.

During rounds, Dr. Ghamande acknowledged Dad’s elevated WBC count and said that they were still waiting for the results of the BAL. He said that barring any unforeseen complications, Dad should be able to transfer to the CCH in a couple of days. He said that they would keep extending Dad’s trach collar trials by a couple of hours a day and continue with CPAP support at night. He thought that Dad should be ready for a speaking valve very soon.

After the doctor left the room, Lanette, Dad’s case manager, told me that according to Cheryl, Lanette’s counterpart at the CCH, Dad has used all of his 90 days of annual Medicare hospitalization coverage, plus 46 of his 60 reserve days. This meant that he would be uninsured in 14 days. I experienced a wave of panic and a knot in my stomach. I couldn’t see any way on earth that my father could go home in two weeks. I had been keeping track of Dad’s days and according to my notes, he had been hospitalized for 105 days, not 136. Until this moment, it hadn’t occurred to me that you could run out of Medicare coverage. It made sense, but I was operating in survival mode and not financial mode. The other unpleasant surprise was that his supplemental insurance was tied to his Medicare coverage. So, although he continued to pay the Medicare and supplemental insurance premiums, he would be uninsured. I sat down with my calendar and recounted the days a couple of times to sanity-check myself. My results differed from Lanette’s, and I called her and contested her calculations. She said she would contact Cheryl, but I was pretty sure that the error was Lanette’s.

Mom returned from her errands and lunch at 12:30 P.M. and I left the hospital for home at that time. Shortly after Mom arrived, a couple of nurses moved Dad to the cardiac chair. While he was in the chair, Travis and Mike, the physical therapists, came by and exercised Dad’s legs. They said that Dad’s progress was very slow and that he had lost considerable strength in his upper and lower extremities. The 105 days in bed had taken a toll on Dad’s strength.

While Dad was still sitting in the cardiac chair, Dawn, a trach nurse, stopped by for a routine trach change. Dawn told Mom that she was handling Svenja’s cases while she was on vacation. By the time that Dawn finished the trach care and left the room, Mom needed to head back to the house.

Mom and I returned to the hospital shortly after 7:00 P.M. Dad was in a very agitated state and insisted that he was going to get out of the bed. Amanda, his nurse, tried to redirect his attention by repositioning him in the bed. Unfortunately, Dad was delirious and was beyond redirection.

When patients use the trach collar to breathe, the trach collar is deflated, which enables the patient to speak around the trach. It’s not the best form of communication, but between the ability to speak around the trach and the letter board, Dad had been able to communicate with us and the various health providers. He started talking about leaving the Mormon church, and then switched to yelling about quitting the hospital union. He warned Mom to run from the Mormons and not let them get to us. He also spoke of membership in the hospital, and he told me and Mom that we should not join the hospital. Maggie, the charge nurse and one of Dad’s former night nurses, came in and chatted with him for a little while. Coincidentally, Maggie was a member of The Church of Jesus Christ of Latter Day Saints. Fortunately, she kept her sense of humor during his ranting about Mormons. He kept talking about bathrooms and coffee and not being around miserable people. After 8:30 P.M., his mental state progressed from agitated to aggressive. Amanda had to get the help of another couple of nurses to restrain him. Dad actively fought the restraints and while flailing his arms, struck one of the nurses. It was an experience that I hope to never repeat. Amanda had administered Seroquel in Dad’s feeding tube before they started restraining him, and she said that he should calm down soon. Mom and I left the hospital, more shaken and drained than we had been in many days, and we prayed that Dad would have an uneventful night. As hopeful as we had been a couple of days ago, we were now worried.

August 19. Mom and I woke up this morning to a broken air conditioner. The normal temperature for central Texas in August approaches 100 degrees. Fortunately, my parents had zoned air conditioning, so the house wasn’t unbearably hot. We were able to schedule a service call before we left home.

Mom and I arrived at the hospital shortly after 7:30 A.M. and saw that Dad was still restrained. We noticed that he was on the trach collar and was breathing hard. We quickly learned that he had been on the trach collar all night. The night staff had taken it upon themselves to extend his eight-hour trial to more than 20 hours. We asked Charma, his nurse, to call Dr. Stewart. When Dr. Stewart arrived, he had Janie, the respiratory therapist, put Dad back on CPAP support. While Janie was making the change, she removed some large clogs from Dad’s throat by using saline to lavage the tracheostomy tube. She said that after Dad’s lungs had had some time to rest, they could move him back to the trach collar. We wanted him to get back on a schedule of using the trach collar during the day and CPAP at night. The doctor wasn’t too thrilled that Dad had not been moved back to CPAP support during the night. While the doctor was in the room, he told us that Dad’s WBC count was now 11.9, which was an improvement from yesterday.

Dr. Stewart then told me and Mom that he wanted to meet with us in a conference room to consult with us about some of Dad’s future possibilities. He started off this consultation by stating that they considered Dad’s recovery to be one of their best achievements and acknowledged our part in that success. He went on to say that he suspected that if Dad did go home, he could have more episodes of pneumonia. He continued by saying that Dad might never fully develop the ability to swallow, and if he did, he could very likely choke on his food and develop pneumonia again. He went on to say that although Dad might never be able to eat peas and carrots, we should let him eat what he wants, regardless of the consequences. He said that there was a good chance that Dad would go home with a trach tube. After that disheartening meeting with one of our favorite caregivers, Mom and I returned to Dad’s room.

Brandon, who was helping Janie, came in at 9:00 A.M. to administer some oral care, which was a disaster. Dad wanted no part of it and spit out the mouthwash. It was ironic how much Dad hated the procedures that were most important to his recovery.

During the morning rounds, the attending physician, Dr. Shekhar Anant Ghamande, told us that Dad had some new drug-resistant infection, which was why there was some purulence in Dad’s secretions. To combat it, they would start Dad on Meropenem, one of the three antibiotics that they could prescribe for this infection. Aside from the infection in his lungs and the pressure sores, Dad was progressing well. The doctor also said that Dad could get a speaking valve today! I had the doctor tell Dad the good news, but Dad asked only if he could go home.

Barbara, one of the hospital chaplains, stopped by to visit Dad. We had come to know her pretty well during Dad’s stay, and she had been very helpful. As I had mentioned earlier, the chaplains were the people to ask about anything in the hospital. During Barbara’s visit, she confided to me and Mom that she was retiring at the end of the month.

When Barbara left, I saw Dr. Pan, the nephrology fellow, in the hall with Dr. Nimrit Goraya, the nephrologist, Dr. Goraya said that they had planned to dialyze Dad for eight hours, but because he didn’t have much edema, they would shorten it to six hours. Instead of being finished at 3:00 P.M., they would finish around 1:00 P.M.

Mom and I left the hospital around 11:30 A.M. for lunch. I spent the afternoon working from home and met with the AC repairman, our hero for the day. Shortly after Mom returned to the hospital after lunch, she met Pastor Don in the MICU waiting room, and they had a nice visit before entering Dad’s room.

Mom called me during the afternoon to tell me that Dad still didn’t have a speaking valve. She couldn’t remember if he was to get one today or tomorrow. I told her that the doctor had said that he should get the speaking valve today. I had her tell Dad’s nurse call Dawn, Svenja’s backup while she was on vacation.

trachPMSpeakingValve — Passy-Muir speaking valve

Shortly before 4:00 P.M., Dawn stopped by to change Dad’s trach tube. This change was different from yesterday’s change because this time she also changed the size of the trach. The new size would enable easier swallowing, which would help Dad control his own secretions. Whenever we swallow or clear our throats, we’re handling normal secretions. The presence of a trach tube makes that normal activity more difficult. This new trach tube had a smaller outer diameter, but a larger inner diameter. This sizing combination would enable Dad to inhale more oxygen and swallow easier. The icing on this new trach-tube cake was that the new trach tube could accommodate the Passy-Muir speaking valve. As soon as Dawn placed the speaking value on the trach tube, Dad was able to speak again. WooHoo! Unfortunately, she had to remove it to put Dad back on CPAP support.

Mom came home shortly after the trach tube change-out and told me that Dad was still on CPAP. I called the nurse and reminded her that he was supposed to go back onto the trach collar at 2:00 P.M. The dilemma was that he could not sleep with the speaking valve, so even if he could sleep with the trach collar, he couldn’t speak. During times when he was receiving CPAP support, he couldn’t have the speaking valve. We just had to get him back on a schedule that would enable him to speak during the day.

When we arrived at the hospital shortly after 7:00 P.M., Dad was still on CPAP, but Renee, the respiratory therapist was in the room. I spoke with her and Amanda, Dad’s nurse, about my concerns, and they said that they would get him back on schedule during the night.

Renee switched Dad to the trach collar for the remainder of our visit so that Dad could talk with us. We had some strange conversations with Dad. It seemed like he thought that he was back at work. He finally adjourned our meeting at 8:00 P.M., and told me and Mom to leave.

A cool front had passed through the area and Mom and I took a couple of moments to enjoy the cooler night air. As we drove home, we marveled at the spectacular sunset. We stopped at the field behind the new Valero gas station to look at the sunset before heading home.

Back in the letter board saddle again

Published on January 4, 2017January 8, 2017 by mellowdee55Leave a comment

Saturday, August 15, 2015. Shortly after I arrived at the hospital at 7:45 A.M., Dr. Hayek ordered Dad moved Dad from BiPAP to CPAP support on the ventilator. They then reduced the settings to less support and let him breathe at the lower setting for about 30 minutes before putting him back on the trach collar. The attending physician, Dr. Ghamande, wanted Dad to have at least four hours on the trach collar today. If this trial worked out well, then they would attempt a six-hour trial tomorrow. During the nephrology visit, Dr. Goraya said that it was unlikely that Dad’s kidneys would function again, although they couldn’t say anything definite for another few weeks. Medicare requires that you be on dialysis for 90 days before you can be declared dialysis dependent. Although the 90^th day was just around the corner, the nephrologists seemed hesitant to declare that Dad had end-stage renal disease (ESRD) until he reached this milestone.

During my morning update of Dad’s early-morning lab work, I was told that his WBC count had inched up slightly from 10.4 to 10.7. It was still within the normal range, and I was provided the usual song-and-dance routine about how you have to treat the whole patient and not just look at the numbers, but his numbers had not just stopped trending downward, they were moving in the wrong direction. After 102 days, I couldn’t help but worry.

At 9:09 A.M., Pandora, the respiratory therapist, put the trach collar on Dad. He was now breathing on his own again. Leslie, his nurse, then asked him the following three questions to test his mental facilities: 1) Could you hit a nail with a hammer, 2) Can a leaf float on water, 3) Is a one pound rock heavier than a two-pound rock. He did OK on the first two, but answered “sometimes” to the last question.

For the second day in a row, Dad wanted some of our coffee. Mom and I decided that we should quit drinking coffee in front of him. I wondered if he could smell the coffee.

Shortly before 10:00 A.M. Leslie, the nurse, moved Dad into the cardiac chair. At 11:00 A.M., my husband, Stan, texted me that he had arrived from Houston. Mom and I left shortly thereafter to join him for lunch at the house.

After a nice lunch with Stan, Mom and I returned to the hospital at 12:40 P.M., while Stan stayed at the house and did some yard work. Dad was still sitting in the cardiac chair. He kept trying to talk and became pretty frustrated. His breathing trial was over at 1:15 P.M., and Pandora removed the trach collar and moved him to the CPAP setting on the ventilator.

At 1:50 P.M., Leslie rounded up a couple of nurses to help her move Dad from the chair to the bed, where he promptly fell fast asleep sitting up in bed. The ventilator started alarming, which drove Mom crazy. I guess it takes a certain type of alarm to get the attention of a nurse or respiratory therapist. In this case, water had accumulated the lines, which wasn’t life threatening. Unfortunately, we weren’t permitted to touch anything; we just had to listen to and endure the alarm while we watched nurses and aides walk past the room.

At 4:55 P.M., Mom went downstairs to the lobby to meet Stan. I wandered into the hall and happened to meet a nurse that we had dubbed as Daytime Natalie. She was a nurse in the CTICU, and Mom and I were very fond of her. She had a couple of minutes to spare and stopped in to visit with Dad.

Mom, Stan, and I ate dinner at a local restaurant to celebrate Mom’s birthday. Her birthday was tomorrow, but this was Stan’s only night in Temple. After dinner, Mom and Stan went home and I returned to the hospital and met Dad’s night nurse, Janine, and his respiratory therapist, Tatyana. Shortly after I arrived, Dad starting started indicating that he wanted to get out of bed, and continued in earnest until I finally was able to leave around 8:45 P.M. Starting at 8:15 P.M., I had started receiving text messages from Stan, asking if everything was OK with me and Dad. Every time I tried to leave him, he would grab my arm and want me to stay five more minutes. I felt more than just a little guilty when I left.

August 16. Mom’s birthday got off to a nice start with cinnamon rolls and some nice gifts from Stan. As Mom and I were driving to the hospital, my phone rang, but my purse was in the back seat and I couldn’t grab it before the call went to voice mail. I pulled over and noticed that the call was from Scott & White. Leslie, Dad’s nurse, had left a message saying that Dad was very tired and needed to rest. She went on to say that she was a little worried about him this morning and that she had contacted Dr. Stewart, who then put him back on the ventilator. She did not want us to wake him. If Leslie was trying to discourage us from racing to the hospital, she was failing miserably.

We encountered Dr. Goraya on the way into MICU, and she said that they would not be dialyzing Dad today. While talking with Leslie outside of Dad’s room, she said that she had been looking through the last few weeks of Dad’s charts, and by all rights, he should not be here now. Her comment made me feel good about his progress, but his condition was still very fragile.

I called Stan and told him about Leslie’s call, and that I still wanted him to come by the hospital while Mom and I were at church, but that Dad might be sleeping and that Stan should bring something to read. Should Dad wake up, then Stan could interact with him. I also wanted Stan to be with Dad, if the doctors should stop by while Mom and I were attending church.

When church was over, I texted Stan to let him know that Mom and I were heading home. He said that Dad woke up around 11:00 A.M., and that they were stepping him down to the trach collar for another six-hour trial today.

After our lunch, Mom and I arrived at 1:30 P.M. at the hospital and met Stan in the waiting room. He had been shooed out by the nurses about 10 minutes earlier. We were pleased to see that Dad was in the cardiac chair and breathing on his own with the trach collar when we arrived. Dad’s breathing trial started around 1:25 P.M. We had the TV turned on to the PGA tournament. Watching TV might not seem like a milestone, but he had probably watched no more than a couple of hours of TV since he was admitted on May 6. It was nice to see him interested in something.

Mom left the hospital for home around 4:25 P.M. About five minutes after Mom left, Dad finally tired of the breathing trial. He was still on the trach collar when I left at 4:45 P.M. His trial didn’t last much more than three hours, but considering how badly the morning started, we were pleased with his trial.

After dinner, we arrived at Dad’s room at 6:55 P.M. and spoke with Leslie for a few minutes before she left for the day. She said that Dad had been wearing her out. He’d been wiggling down the bed all day, in what seemed like attempts to escape from the bed. She finally made his bed alarm a lot more sensitive so that it would alarm whenever he wiggled down to one end.

Leslie said that she noticed during the day that Dad’s secretions had seemed more yellow and thicker than normal. She said that she had talked to the doctor about ordering a sputum culture. She said that it might not be anything because he’s not running a fever. The WBC count wasn’t collected during the early morning lab work, so I didn’t know if his WBC count was elevated.

Dad’s night nurse was Amanda. When she completed her evening assessment, she told us that his temperature was 98.7, which is practically normal for most people. However, normal for Dad was just over 97 degrees. It probably wasn’t a big deal, but I hoped that the sputum culture tomorrow would reveal something.

August 17. Mom and I arrived at Dad’s room a little after 7:30 A.M. and found that he was restrained and was already receiving conventional dialysis. His nurse, Jasmine, and another nurse were repositioning Dad in his bed, so his curtain was closed. While waiting in the hall I spoke briefly with Amanda, his night nurse, and she said that during her shift, Dad had tried repeatedly to pull out his trach tube. When she explained to him what that would mean, he indicated that he didn’t care and wanted to “be done with it.” To calm him, she gave him some Seroquel. As Dad’s health improved, it seemed that he was his own worst enemy.

Jasmine, Dad’s nurse, later told him that she would remove his restraints if he promised that he would not try to pull out his trach tube. She stressed to him that his safety was her primary concern. He indicated that he would not pull out anything. Jasmine told us that they would put the trach collar on him later today so that he could better express his wishes. Her comment sort of implied that he might get a speaking valve, but I wasn’t sure. I was a little disturbed when I learned that Dad’s WBC count was up to 13.2. Based on Leslie’s comments yesterday and Dad’s elevated WBC count, the doctor had ordered a Bronchoalveolar lavage (BAL) to see if Dad had any new infections.

Dad finally used the letter board and asked lots of questions about his stay. He didn’t realize how long he had been in the hospital and was very surprised when he heard what happened to him. I spent a long time explaining some details about his saga and I think that it helped to improve his attitude. Shortly after that, we started communicating more with the letter board. He seemed to be a lot calmer and seemed to understand more about his circumstances. letterBoard

Shortly before 11:00 A.M., I told Dad that Mom and I had to leave to attend a meeting with April Jones, the nurse manager at the CCH. We wanted to ensure, or try to ensure, that his second time at the CCH would be better than the first. He seemed pleased and lettered that he would be interested in knowing what she had to say. Following an annoying and frustrating meeting with Ms. Jones and her associates, Mom and I returned home for lunch. I stayed home and worked for the remainder of the afternoon.

When Mom returned to the hospital after lunch, a nun from the hospital’s chaplain office was in Dad’s room singing to him. Using his letter board, Dad told the nun to sing a song to Mom. Dad had already given the nun one of the family photos that I had taped to the wall. She said that she’d hang it in the chapel. Mom found the experience pretty surreal and realized that from one minute to the next, she never knew what to expect from Dad.

After pleading unsuccessfully for days to get Dad to use the letter board, it seemed that he now would not put it down. From what Mom was able to surmise, Dad whipped out the letter board for every person who entered the room—the nurse, doctors, and techs. Using the letter board, he asked Dr. Ambroson to take him to the kitchen, which tickled the doctor. In hindsight, this request was an indication that Dad was having trouble distinguishing the difference between home and the hospital. However, it seemed like a different person was now occupying Dad’s bed.

When Dad’s dialysis session was over, Dawn, the respiratory therapist, put on the trach collar. Then the nurses moved him to the chair. As Mom left the room, Dad used the letter board to tell her to be careful.

When I arrived at Dad’s room at 6:45 P.M., he was still in the cardiac chair, but he was soon moved back to his bed. Dad and I visited until 9:00 P.M. Using the letter board, he asked lots of questions about eating, going home, and many other things. He seemed to have lost some of the clarity that he had during the day, which I attributed to being exhausted from such a busy day. When I left, he still had one more hour remaining on his six-hour trial of the trach collar.

His night nurse, Amanda, said that she would give him some Seroquel this evening after the breathing trial and that he should sleep well. I wasn’t over the moon about Dad’s level of clarity this evening, but he had had quite a day communicating with everyone. I left the hospital hoping that the next day would be even better.

100 days and counting

Published on December 29, 2016 by mellowdee552 Comments

August 12, 2015. Mom and I arrived at Dad’s room at 7:45 A.M. Dad was on a four-hour conventional dialysis trial to judge his tolerance. I freaked out when I saw that his feet were elevated above his head. During dialysis, patients who suffer from hypotension often have their feet elevated above their heads to their increase blood pressure. With his history of aspiration, that practice could not be applied to him. Olga, his nurse and the one who had elevated his feet, responded to my outburst and raised his head.

After Olga had repositioned Dad, I asked her about his morning lab results. I was thrilled to learn that his WBC count had dropped further and was now at 11.3. A normal WBC count seemed within sight!

Mom’s birthday was in four days, and we were anticipating that Dad would be at home when we celebrated his birthday on October 6. I thought that we should have a four-tier birthday cake on Dad’s birthday—one tier for each of the birthdays we missed celebrating this year. Dad seemed to brighten up at idea and indicated that he wanted chocolate, Mom wanted carrot cake, I wanted rum cake for my layer, and I decided that Stan wanted apple cake.

During rounds, we met the new attending physician, Dr. Shekhar Anant Ghamande. He said that Dad was progressing and that things were getting better, but that Dad needed some exercise.

Dad was a bit difficult to handle. He kept trying to talk, which was impossible, and he refused to use the letter board to communicate. Other than learning that he wanted chocolate cake for his birthday, we had no successful communication with Dad.

The conventional dialysis trial, which Dad completed without much difficulty, was over at 1:15 P.M. Dad was moved into the cardiac chair, but he would not put his feet on the chair’s foot stand. Without his feet on the foot stand to stop him from sliding off the chair, the nurse had to reposition him in the chair every few minutes. Mom left the room for a few minutes and when she returned, she heard singing coming from Dad’s room. While she had been away, a Catholic nun from the hospital’s chaplain office had stopped by to see Dad. With Dad’s refusal to use the letter board to communicate, I couldn’t imagine how they communicated.

Dad tired of sitting in the chair and wanted to get back into bed. The nurse had left the room to find someone who could help her, but while she was gone, an ultrasound tech arrived and spent about an hour checking Dad’s legs and arms. The nurse later said that by the time that the tech left the room, Dad was as inspired to transfer back into bed as she had ever seen him. We never did learn about the purpose of the ultrasound, but at least a couple of us were glad for his extra time in the chair.

When Mom and I returned to the hospital after dinner, we were pleased to see that Dad was sleeping and that Tyler was his nurse again. It was the first day in many days that I could tell Stan that we had had a good day today.

August 13. As Mom and I drove to the hospital, we realized that Dad was starting his 100^th day in the Scott & White institution. We arrived at the hospital at 7:35 A.M. Dad was restrained, but I quickly removed the soft restraints.

Dad was all hot and bothered to get out of the bed at 7:45 A.M. Anna, his nurse, was pretty busy, so we had to wait until 9:45 A.M. to get him into the chair. During Dad’s initial stay in the ICU, he hated the uncomfortable chairs, and practically fought to stay in bed. Mom and I were glad that he now wanted to get out of the bed.

At 10:00 A.M., Travis and his entourage of occupational and physical therapists stopped by to exercise Dad. They stood him up from the chair and onto the floor. Dad’s legs would not straighten out, but he was able to kinda sorta stand, with some assistance. The therapists worked with him for about 10 minutes, moving his arms and legs. Cardiac chairs are designed to take patients from a recumbent to a sitting position. You don’t usually step out of or into a cardiac chair. Getting Dad resituated into the chair was a real struggle for the three therapists, but they eventually succeeded.

Mom left the room to call April Jones, the nurse manager at the CCH, to see if she could make an appointment to meet with April next week. We had not been thrilled with our previous experience with them and wanted a better relationship the next time. Mom wanted to start working on that now.

While Dad was in the chair, Michelle, the dietitian, had stopped by for one of her routine visits. In addition to her usual concerns about Dad’s nutrition, she was now concerned about the extended use of antibiotics and how they could affect his digestion. She said that she would suggest that the doctors consider starting him on probiotics. I don’t know if they ever did add probiotics to his daily regimen of meds.

After Dad got back into bed, he slept for 10 minutes and then woke up and started worrying the bed linens and pulling on his lines and trach tube. Dad seemed to be having lots of secretions, and he seemed to be struggling to breathe. Nikita, the respiratory therapist, happened to walk past the room as he was having breathing problems. She said that Dad had been on CPAP since 7:00 A.M. She thought that it was time to give his lungs a break, and switched him back to BiPAP support shortly before we left for dinner.

Mom and I returned to the hospital at 6:40 P.M., just prior to the shift change. The big pleasant surprise for us was that Andrea was Dad’s night nurse. She had been his nurse for the first three days when Dad returned to Memorial, and Mom and I loved her. When we first met her, Andrea had mentioned that she usually liked working nights, and we were glad to see her again and assigned to Dad. She commented on how much Dad had improved since she had last seen him 19 days earlier.

Mom and I stayed with Dad until about 8:00 P.M. On the way out of the hospital, we walked over to the Cardiothoracic Intensive Care Unit (CTICU) in the north tower, which was where Dad stayed during his first stint at Memorial. In addition to seeing a couple of the nurses we knew, we were enthusiastically greeted by a nurse we didn’t remember. Mom and I were really touched by the outpouring of support that we received from some of the caregivers in CTICU. Today had been another pretty good day, and we left the hospital at 8:15 P.M., feeling like Dad would have a relatively good night.

nursestation — View of nurses’ station from Dad’s room

August 14. Mom and I arrived at the hospital at 7:45 A.M. to find that again Dad was restrained. Evidently, Andrea had had to restrain him about four hours earlier because he was trying to pull out his trach tube and PICC line. As I had done for the past few days, I untied Dad’s restraints. Almost immediately, Christine, his nurse, reprimanded me for removing his restraints and reminded me about the importance of restraints and notifying the nurses, and blah, blah, blah. I had a pretty good relationship with most of the nurses and caregivers, and they knew that we were a constant presence in Dad’s room. It wasn’t as if Christine had never laid eyes on us. Dad’s room was right in front of the nurses’ station. While I understood the importance of the restraints for patient safety, I was annoyed at the cavalier attitude that some nurses seemed to have about them. As far as I could tell, restraints were used because the hospital could not assign someone to watch him. Wouldn’t you think that a nurse would ask family members if they would or could stay with the patient so that they could remove the restraints? My father wasn’t unconscious; he knew that he was tied to the bed. Who in the world would think that being restrained was good for patient morale?

On a more positive note, Dad’s WBC count was down to 10.4, which was finally in the normal range; it was a tad on the high side, but normal nonetheless.

Drs. Hayek and Stewart (who I affectionately dubbed the fellows) stopped by and we discussed the status of Dad’s breathing and the possibility of having the speaking valve trial on Monday. However, before Dad could get a speaking valve, he had to be able to breathe on the trach collar. Dr. Stewart told us that the respiratory therapist would stop by later in the morning to make the switch.

It was Friday, the day we referred to as the last day of dialysis for the week. As Carlos, the dialysis nurse, was setting up the dialysis machine, Dr. Nimrit Goraya, the attending nephrologist, stopped by with her nephrology fellow and residents in tow. She told us that because Dad had tolerated the last conventional dialysis trial, he would receive another four hours of dialysis again today. Carlos got the dialysis started at 9:30 A.M. In principle, Dad’s dialysis session would be over by 1:30 P.M.

During Dad’s morning trach care, Ashley, the respiratory therapist, changed out the ventilator apparatus for a trach collar and trach mask. The trach collar test was on!

I stayed home after lunch, but Mom returned to the hospital at 1:00 P.M. Shortly after she arrived, Dad started foaming around his trachstoma. She quickly located Ashley and Dr. Stewart, who said something about a hypoxic episode. Ashley switched Dad back to the ventilator. Although Dad had failed his initial breathing test, Dr. Stewart said that it was still a good day. Unbelievably, Dad slept through the whole ordeal, and he slept for the remainder of the time that Mom was with him.

Dad’s dialysis session was over at 1:15 P.M., and they were able to remove 1,400 ml of fluid without any instances of hypotension, which moved him one step closer to being discharged from Memorial to the CCH.

I arrived at the hospital at 6:45 P.M., and once again was very pleased to see Andrea. Dad was awake and looked pretty good. However, soon after I arrived he became very agitated and wanted to get out of bed. He insisted that he needed to get out of bed to use the bathroom. I had to hold him down. He tried to push me away, but for the first time in my life, I was stronger than him. He kept edging his feet over to the side of the bed like he was trying to get up. He finally started pulling his pillow out from behind his head and indicated that he was uncomfortable. I called Andrea and told her that Dad needed to be repositioned. Andrea and another nurse respositioned him, which seemed to calm him a little and divert his attention from his original purpose. Because of his agitation and the fact that he had had to be restrained the previous two nights, Andrea also gave him some Seroquel through his feeding tube. According to Andrea, the doctor had increased Dad’s dosage of Seroquel for nights when he was restless.

I was shooed out of the room at 7:45 P.M. so that Andrea could tend to him. I probably wouldn’t have been able to come back into his room for at least 15 minutes, so it seemed like a good time to go home. Dad had been so distraught during the time that I was there that I hated leaving him, and left feeling a little conflicted. It just hadn’t felt like a good day.

Maybe Bedside Manners 101 isn’t a required course

Published on December 20, 2016December 22, 2016 by mellowdee55Leave a comment

sunflowervase2 August 9, 2015. We arrived at the hospital at 9:00 A.M. to find that Dad was still asleep and restrained, the nurse’s name was not on the board, and Dad’s feeding tube was empty. Two out of three of these situations were unacceptable. I went to the nurse’s station to find out who his nurse was and to let them know that his tube feed bottle was empty. A nurse entered the room with a fresh bottle of Nepro, changed out his tubing, and replaced the empty bottle. The nurse also told me that Dad’s nurse was Nicole, who finally showed up at 9:15 A.M. and introduced herself.

My annoyance diminished somewhat when Nicole provided me with Dad’s latest lab results. His WBC count was still dropping and had reached 14.9, down from 16.4 yesterday. His liver function was only slightly elevated, which was fantastic news.

Dr. Nidhi Munshi, the weekend nephrologist, stopped by at 9:30 A.M. and told us that Dad would have an eight-hour dialysis session tomorrow.

Stan arrived at 10:00 A.M. and was soon followed by Dr. Vazquez and his entourage. We removed Dad’s restraints and told the nurse that Stan would be there until lunchtime and he would watch Dad to ensure that he didn’t pull out any of his lines and devices. They put him back on CPAP, but said that it seemed that his brain would sometimes forget to breathe when he was asleep. When we met with Stan during lunch, he told us that Dad had been fine and not become agitated while Mom and I were at church.

After lunch, Stan returned to Houston, Mom went back to the hospital, and I stayed home to catch up on some work. When Mom returned home, she said that they received the results from his blood test on Friday and he didn’t seem to have any infections present in his blood. Shortly after she had arrived after lunch, they had changed his ventilator from CPAP to pressure support, which meant that he was breathing on his own. Dad had refused to use his letter board and he couldn’t get a speaking valve until he could breathe on his own, so we were making some progress.

Mom and I returned to the hospital around 7:10 P.M. and were delighted to see that Tyler was Dad’s nurse. He hadn’t been assigned to Dad for several days. Tyler said that he noticed an improvement in Dad. While Mom and I were visiting, Dad seemed to be over-breathing the ventilator. His blood pressure was higher this evening, too. When I mentioned to Tyler that he’d be NPO after midnight because of a TEE scheduled for Monday, Tyler said that he didn’t know about the TEE. Mom and I just looked at each other and rolled our eyes. We headed for home at 8:20 P.M.

August 10. We arrived at 7:40 A.M. and noticed that Dad was already on dialysis. Before we arrived, they had drawn blood and ran an ABG test and found that his pH was up to 7.53, which meant that, instead of being acidosic, his pH was too alkaline. We were told that they could fix his current pH level by reducing the bicarb dialysate that he received during dialysis.

Dr. Evan Hardegree stopped by to get the TEE consent forms signed and told us that he’d be assisting Dr. Elizabeth Ebert. It was a coincidence that the cardiologist who was performing the TEE happened to be my parents’ doctor. I still hadn’t gotten used to the fact that once you entered the hospital, you dealt with only the hospital’s doctors and not your own. I hadn’t seen Dr. Ebert since May 19, the first time that Dad had aspirated.

Dr. Lu Pan stopped by to talk with us again about testing Dad on the four-hour dialysis session. He assured us that they would adjust the amount of fluid removed if Dad’s blood pressure dropped too much. Once again, the discussion about these conventional dialysis sessions was increasing my stress level. The back story to the discussion about the shorter dialysis was that they were prepping him for a transfer to the CCH.

Around 9:00 A.M., the cardiology team, led by Dr. Ebert, stopped by with the equipment necessary for the bedside TEE. While they were trying to decide whether the Fentanyl already in Dad’s system would be enough to keep him comfortable during the procedure, Svenja, the trach nurse arrived for a routine follow-up visit. The new tube was supposed to help wean him from the ventilator and she was concerned that Dad had not been on CPAP support much since she replaced the tube.

Mom and I left the room at 9:05 A.M. and passed the time by getting some coffee from the cafeteria. Sometimes the volunteers offered free coffee from their cart, but their coffee was pretty bad. I was no coffee connoisseur, but even I had standards, albeit low. As we arrived in the ICU waiting room, Dr. Hardegree met us and told us that they couldn’t detect any sign of infection on the new arterial valve. Yay!

Dr. White came by about 11:00 A.M. and was a real Debbie Downer. I had been feeling a little positive about Dad’s improved condition. In addition to the good news about the TEE, Dad’s WBC count was down to 13.1. When I looked for some positive feedback from the good doctor, he said that although Dad was better than he was when he first arrived, the doctor was not convinced that Dad’s condition would ever improve. Furthermore, because of Dad’s recurring apneic spells, he wasn’t sure that Dad would ever get off the ventilator, and he questioned whether Dad’s mentation would ever improve. When I told him that Dad had just had a TEE and that he was still partially sedated, he was not moved. I felt sick. If Dr. White was right, my father would never forgive us for trapping him in this hellish existence. Dr. White was one of the doctors who had a strong enough voice that Dad might be able to hear what he said, and I was very worried that Dad might have overheard this dismal prognosis. Mom said Dad’s condition seemed to improve after he received physical therapy. Dr. White said that they would try that and that they’d try to find him the cardiac chair.

hdwhite_prognosis — Dr. White’s notes in my father’s chart sums up his attitude about my father’s case.

After lunch, Mom returned to the hospital and I stayed home and tried to accomplish something at work. Sometimes I felt guilty for logging on to work and sending Mom back to the hospital to deal with our alternate existence.

When Mom returned home, she had a mixed report about the afternoon. It seemed to her that Dad had finally bonded with her again. We don’t know why he had been giving her the cold shoulder, but the problem seemed to have resolved itself.

Dad had been in an inside room for several days, and the doctor thought that a window room might help Dad with his mentation and delirium problems. With an inside room, there’s no real sense of day and night. When his nurse was able to round up a couple of other nurses to assist her, she moved Dad to room 238. The hospital was still undergoing a massive facade overhaul, so the window rooms weren’t all that quiet.

After Dad was moved, the nurses were able to move him into a cardiac chair. It’s an amazing contraption that starts as a bed and then morphs into a chair. Dad was still in the chair when PT arrived. The therapist was able to adjust Dad’s position in the chair, but Dad could not sustain an upright sitting position. He just kept slipping down the chair and didn’t seem to have the strength or inclination to sit upright.

Pastor Tom, the senior pastor from their church, stopped by to see Dad. Dad was sleeping, but Tom said that he’d try to visit again tomorrow.

When Mom and I returned to the hospital at 6:55 P.M., we were thrilled to see that Tyler was Dad’s nurse for the night. It had been a stressful day, with more downs than ups. Knowing that Dad was in good hands for the night always helped me and Mom rest better at night. I was still very disturbed about Dr. White’s prognosis and kept replaying the conversation in my head. During my nightly call with Stan, I was pretty upset by the events of the day.

August 11. Mom and I arrived at the hospital at 7:45 A.M. and noticed two things: Dad was restrained and he appeared to have had a bath and shave the previous night. We got Olga, his nurse, to remove the restraints. He immediately started grabbing at his lines and we had a difficult time with him for a while, but he eventually calmed down after they repositioned him. Dr. Hayek stopped by at 8:00 A.M. and adjusted the ventilator for CPAP. He said that Dad had been on CPAP for about 3-5 hours yesterday. I was pleasantly surprised because I thought he had been on CPAP support for only an hour. The other good news for the morning was Dad’s WBC count: it was now down to 12.2.

The fancy schmancy hospital beds were best suited for persons up to 5’10” in height. Dad was 6’1” and often would lie diagonally in the bed. In this diagonal position, he often started slipping out of the bed. We mentioned the problem to Olga, and she was able to find one of the few bed extensions, which added enough length to accommodate Dad’s frame so that he could lie straight in relative comfort without slipping.

Around 10:15 A.M., my parents’ next-door neighbors, LoSharis and Tom, stopped by for a short visit. Dad seemed to brighten up as they entered the room. He immediately recognized Tom and extended his arm to shake hands. I hoped that they would return soon. It seemed as if the fog that surrounded Dad was lifted while they were in the room. Mom had to run some errands, so she left shortly after Tom and LoSharris.

Dr. White made his rounds at 11:00 A.M. When he entered the room, I looked him straight in the eye and told him that Dad was wearing his hearing aids today, and that I’d appreciate it if he would respect that. He paused for a moment, nodded as if he understood the point that I was trying to make, and said, “OK.” Today’s meeting went better than yesterday’s, and Dr. White admitted that Dad appeared to be a lot more alert. I explained to him again that yesterday Dad had just had the TEE when the doctor rounded, so it hadn’t been a fair assessment. To his credit, he agreed that timing was everything.

Nothing positive happens around here without the other shoe dropping, and today was no exception. Dr. White said that he wanted to start Dad on four-hour dialysis trials to prepare him for a transfer to the CCH. I told him that I needed plenty of advance notice because we wanted to meet with April Jones, the CCH nurse manager, before he transferred. We had some concerns about the care that he had received there. Dr. White said that he also would like to hear my concerns and would be available to talk with me anytime. He wanted some specifics about the CCH and I told him about our first 12 nightmarish days there. I also told him that because the place was so dark it didn’t seem like a good environment for someone who was suffering from delirium. From what I could surmise, my comments seemed to fall on deaf ears.

When Dr. White left, I found a quiet place in the hospital to attend an online meeting for work. When I returned from my meeting, Dad was sitting in the cardiac chair. He started getting fidgety and then he experienced some breathing problems. The respiratory therapist was called, and she adjusted his ventilator settings.

After running her errands, Mom returned to the hospital at 1:00 P.M., and I left the hospital a few minutes later so that I could work online from home for a few hours.

Dad sat in the cardiac chair for about another hour. He kept squirming and sliding out of it and was finally moved back into the bed. As soon as he got back into bed, he fell asleep and slept until Mom went home for dinner.

Mom and I returned at 7:10 P.M. and learned that Tyler was taking care of Dad again! We were very surprised because Tyler had already worked three days this week. He told us that he was working five days this week. I was so glad to see him that I forgot that I was opposed to nurses working 60-hour weeks. Seeing him was a relief and felt like the answer to a prayer.

Condition stable; prognosis guarded

Published on December 15, 2016 by mellowdee551 Comment

sunflowersbg3 August 7, 2015. Mom and I arrived at the hospital at 7:45 A.M. Dad was still receiving CPAP breathing support. We were surprised to see that he was not having dialysis, but we had scarcely put down our purses when Lucy, the dialysis nurse, stopped by and said that she had been told to set up the (traditional) four-hour dialysis session. As she left the room, Dr. Lu Pan, the nephrology fellow, arrived and said that they were going to try the four-hour dialysis to see how Dad tolerated it. Mom and I were emphatic that he was not yet strong enough, and that Dr. Yau had agreed with us yesterday that he was not strong enough. Either the doctor had been patronizing or lying to us, or he had neglected to update Dad’s chart. I was not feeling too charitable with my suspicions.

After the nephrology gang left the room, Shannon, Dad’s nurse, told us that Dad’s WBC count was still on a downward trend and was now 17.6. Although his liver was still in shock, his lab work indicated that it was recovering, albeit slowly. She put drops in Dad’s eyes and got him situated in bed and ready for the day. She told us that when the doctor stopped by on rounds, he would discuss Dad’s dialysis plan with us.

I tried again to get him to do some type of exercise but struck out. Although both of my parents could be pretty determined, it had become pretty obvious to me, and probably my husband, that I had inherited the stubborn gene from Dad.

During morning rounds we learned that Dr. Alfredo Vazquez-Sandoval was now the attending physician. He told us that he would order a transesophageal echocardiogram (TEE) to verify that Dad’s new heart valve was still infection free. In an attempt to reduce Dad’s sleepiness, the doctor said that he would reduce Dad’s dosage of Seroquel, which they were giving him for delirium. He also talked about replacing Dad’s nasal feeding tube with a PEG, which would be inserted directly into his stomach. After my father-in-law’s terrible experience with a PEG, I had some strong opinions about this option and refused to entertain the suggestion. Because of Dad’s low blood pressure, the doctor said that Dad would have the eight-hour (and gentler) dialysis session today. You would think that with Dad’s improved status, these morning meetings would get easier. If only. On the one hand, he seemed to be getting better. On the other hand, his prognosis was still guarded. The cynic in me thought they’d like to get him out of the hospital so that his death didn’t adversely impact their survival statistics.

Lucy returned shortly after 10:30 A.M. to set up Dad for another eight-hour dialysis session. Dialysis started shortly before 11:00 A.M. Dialysis made Dad pretty sleepy, so Mom and I decided to leave for an early lunch and to run some errands.

I had to work from home during the afternoon, but Mom returned to the hospital after lunch in time to witness torture in the form of a blood draw. Under the best of circumstances, my Dad is what’s known as a bad stick. Shortly after his surgery in May, a nurse used ultrasound to find a vein so that he could start an IV. Today, the nurse told my mother that they needed two blood samples for a blood culture test and that only one sample could be taken from the PICC line. Not surprisingly, the lab technician had a difficult time finding a good vein, trying four times before she was finally successful. I hope the day will come when we won’t need a vial of blood for some of these blood tests. Although Elizabeth Holmes’ company, Theranos, has come under fire from the medical community, I hope that they’re successful.

Around 2:45 P.M., Lucy increased the speed of the dialysis blood transfer. She had scarcely left the room when the dialysis machine started making noise, which prompted Mom to leave the room and look for assistance. She quickly encountered Lucy, who returned with Mom to the room and decreased the blood transfer rate of the dialysis machine. I had mentioned in an earlier post that the dialysis team had customized the different warning and alarm sounds on these smaller dialysis machines. When these systems encountered problems, ranging from low patient blood pressure to clogged lines, the room sounded like you were in the middle of the “Who Framed Roger Rabbit” movie. The sounds emanating from this machine were unnerving.

The physical therapist stopped by and left a printout of some simple bed exercises with Mom. Mom said that at some point during the afternoon, someone, perhaps a social worker, stopped by to talk to her about Dad’s experience. She didn’t get a card or a name and Shannon (the nurse) had not seen anyone. Because of my less-than-fond feelings toward the case managers, I was suspicious about why this woman had been there, but I didn’t have any way in which to follow up on this impromptu meeting.

When I returned to the hospital after dinner, Dad was sleeping. Because I arrived before the shift change, Shannon was still there and was able to update me on Dad’s condition. She told me that because of his TEE that was scheduled for tomorrow morning, he would be NPO during the night.

Dad was still sleeping and didn’t wake up when I rubbed his hands and feet and moved his arms, so I decided that it was time for me to leave for the night.

sunflowersbg4 August 8. Mom and I arrived at Dad’s room at 6:30 A.M. The room was dark and Dad was still sleeping. Jennifer, his nurse, arrived at 7:30 A.M. and started her morning assessment of Dad. When she was finished, she told us that the night nurse told her that Dad was very agitated during the night. I wasn’t sure what that meant, but it didn’t sound good. On a more positive note, Dad’s WBC count was still trending downward.

Dad was still on BiPAP support from the night, but Dr. Hayek, one of the pulmonary fellows, said that he would put Dad back on CPAP after he was more awake. When Dad was sleeping, he sometimes quit breathing. It was almost like his body couldn’t remember to breathe when he was asleep–just another thing that made me nervous.

Dr. Brett Ambroson, the resident, came by to talk with us about Dad’s current condition. The TEE was still planned for this morning, and they’d be doing the procedure in Dad’s room. We were still waiting for results of the blood cultures from yesterday afternoon. Dr. Ambroson said that they were still working on a plan to transfer Dad to the dreaded CCH.

Dad got mad and frustrated and started flailing his arms. I used his anger and redirected it to more positive activities—like exercise. For about 15 minutes I was able to push against his arms as he struggled to raise them. It was the most resistance exercise that he had had in weeks.

At 9:40 A.M., Dad received his morning meds through his feeding tube. Shortly thereafter, he fell asleep and quit breathing. Fortunately, when the CPAP system detects that he hasn’t breathed in a few seconds, and the ventilator kicks in. He started breathing again after a few moments. He experienced a few more rounds of this breathing/not breathing scenario in the morning. His best breathing had occurred when he had been mad and exercising.

Dr. Vazquez and company stopped by during the morning rounds. He said that he was increasing Dad’s dosage of steroids to help with Dad’s adrenal glands and to help raise his blood pressure. He told me that the TEE procedure would be postponed until Monday, which meant that Dad had been NPO for more than 12 hours for no reason.

Dr. Munsche and the nephrology team stopped by and told us that Dad wouldn’t have dialysis this weekend. They plan to start dialysis again on Monday. She said that they should be able to continue dialysis on Monday during the TEE.

Dad had continued to have trouble maintaining steady breathing. Around 10:30 A.M., Dr. Hayek moved him back to full ventilator support. The plan was that they would move him back to CPAP support after lunch when I tried to get him to exercise. Maintaining a regular breathing pattern was another good reason to exercise him.

Mom and I returned to the hospital at 1:15 P.M. Dad was still asleep and still on the ventilator. We didn’t want to wake him, so we started reading our respective books and devices. Almost immediately, I fell asleep on the couch and Mom fell asleep in the chair. All three of us woke up an hour later when Jennifer and another nurse repositioned Dad in his bed.

Around 3:30 P.M., Dad started getting very agitated and I couldn’t get him to calm down. Jennifer and I discussed giving him Seroquel, the delirium drug, to avoid having to restrain him again. As it was, Dad’s agitated behavior was interrupted by some bedside treatment, and Mom and I had to leave his room. When we returned to his room 15 minutes later, he was sleeping. Mom and I didn’t feel like we were adding much value, so we left for home at 4:15 P.M.

When I arrived back at the hospital at 7:10 P.M. he was asleep, but restrained. While I was watching him sleep, his MAP dropped to 56. Dustin, the night nurse, came in and checked the monitor and said that it looked like Dad’s heart rhythm had also changed. He contacted the doctor, who told Dustin to start Dad on a saline bolus to see if they could raise his blood pressure without drugs. This was the first time that I was aware of that they had tried this approach to raising his blood pressure. To the layperson who didn’t know better, saline seemed like a better alternative than a vasopressor.

While we were waiting to see if the saline would do the trick, I asked Dustin about the restraints. He said that about an hour after we had left for dinner, Dad started pulling at his trach and then disconnected himself from the ventilator, so they had no choice but to restrain him. He also said that they would start him back on the Seroquel tonight.

At 7:54 P.M., Dad’s MAP finally rose to 65. I had scarcely exhaled in relief when it dropped back down to 56. I couldn’t be sure, but it felt like Dad’s low blood pressure was having an inverse effect on mine. It certainly affected my level of stress. Dustin checked again with the doctor, and they decided to continue the bolus therapy. After Dad’s MAP reached 68 and remained at that level for a while, I chatted with Dustin and left the hospital at 8:40 P.M. Between the restraints and his sudden struggles with hypotension, I wasn’t confident that Dad would have a good night. Nor was I sure that I’d get much sleep.

Frustration at every turn

Published on December 6, 2016December 9, 2016 by mellowdee552 Comments

sflower August 5, 2015. When Mom and I arrived this morning, Dr. Brett Ambroson, the resident, was finishing up his morning assessment of Dad’s current status. We were pleased to learn that the vomiting episodes from the previous day had stopped. Dr. Ambroson also noted that Dad would now move his extremities when prompted by him or the other care providers. When I asked about Dad’s WBC count, the doctor said that it was down slightly from yesterday. I wasn’t thrilled with the very slight decrease, but at least the steady upward trend had been arrested. While speaking with Dr. Ambroson, Lucy and Cheryl, the dialysis nurse and her aide, prepared Dad for another eight-hour session.

When the providers left the room, I shut the door and told Dad about the events that started on July 22. Although I did all of the talking, it was a very uncomfortable and disturbing interaction. He seemed to be very mad and appeared to be silently shouting at me. He then ignored Mom for the remainder of the day. I never knew why he was so mad.

Svenja, the trach nurse, stopped by and told us that she would be switching out his trach tube for one that was longer and softer. She explained that the new tube might help to wean him off of the ventilator and help with the air leakage problems that he had been experiencing. After Svenja inserted the new trach tube, I had her deflate the cuff to see if Dad might be able to speak a few words. He really tried, but we couldn’t understand him. I had hoped that I might be able to get some sense of why he was so mad. Our inability to communicate with him this time was disappointing but did not leave us with the feeling of devastation that we experienced on July 25 when we thought that he might die without being able to say good-bye.

During dialysis, Dad’s heart rate rose to 143 and stayed there and his MAP reached 103. Dr. Yau ordered an EKG and then ordered metoprolol to reduce Dad’s heart rate. Lucy also reduced the amount of fluid that was being removed during dialysis. These two actions returned his heart rate to the 70s-90s. At the end of his dialysis session, Dad’s heart rate returned to the 60s.

Mom returned to the hospital after lunch, but I stayed at home to work.

Like most of his days now, the afternoon was a mixed bag. He was now breathing on his own, with BiPAP support. However, his increased awareness seemed to increase his propensity to pull on his various invasive devices. To prevent the accidental or intentional removal of his feeding tube, the nurse bridled it.

At the completion of his dialysis session, Lucy stopped by and redid his dialysis catheter dressing. Because the procedure required a sterile environment, Dad had to wear a mask. The procedure took about 20 minutes and made Mom nervous. Because Dad was breathing on his own, she was afraid that the mask would inhibit his ability to breathe. The mask was over his face and not his trach, so I don’t know how much the mask actually interfered.

I returned to Dad’s room at 6:45 P.M to find him bent over to his left side with his head hanging off the pillow and his heart leads disconnected from his chest. His monitor was alarming, with no nurse or aide in sight. I was a little miffed, especially since no one came even after I used the call button. I finally flagged down Dr. Stewart, who helped me get him resituated and his heart leads reattached. You just have to hope that nothing goes wrong with you or a loved one during the shift change because you’re totally on your own.

Sarah was back as Dad’s night nurse, and Maggie, who was his nurse the previous night, was the charge nurse. Despite my earlier concerns, I was relieved that Dad was under the care of these two women. Maggie told me that she would be helping with baths again tonight and that they planned to also give Dad a shave. My father disliked facial hair, especially on himself. During his stay in the hospital, he had started to appear pretty scruffy.

Dad was much easier to get along with tonight. After Sarah assessed him and got him situated in bed, he spent most of the evening holding my hand until I left at 8:00 P.M.

August 6. Mom and I arrived at the hospital at 6:45 A.M. Dad’s nurse, Sarah, said that he had had a good night. True to their word, the night nurses had bathed and shaved Dad, and he looked much better. Dr. Ambroson said that Dad’s numbers were trending in the right direction, but he didn’t share those numbers with me. I asked him if Dad could see the physical therapist today. Physical, occupational, and speech therapy always took a backseat to anything else. Dialysis had prevented Dad from receiving PT yesterday. When the good resident had left, I told Sara that I wanted to speak with Lynette, Dad’s case manager. Yesterday, Dr. Yau had made a vague passing comment about transferring Dad to the CCH, and I wanted to follow up with the case manager.

At 9:15 A.M. Dad started having something akin to a panic attack. He indicated that he had chest pain, and then his heart rate spiked to 144. He stayed panicky and tried to tell me something, but I couldn’t make out what he was trying to tell me. At 9:45 A.M. he was transported to the interventional radiology department, where they replaced his tunneled catheter with a PICC line. I accompanied him so that I could sign his consent form. During the trip through the labyrinth that is the back halls of the hospital, the battery in Dad’s bed seemed to lose its charge. As wonderful as this bed could be, it seemed practically glued to the floor when it had no power. The transportation attendant eventually got the bed moving again, and we finished our journey.

When I returned to Dad’s room, Michelle, the dietitian, asked me if the plan was to send Dad back to the CCH. Shortly thereafter, Dr. George and the nephrology fellow stopped by and asked if the plan was to send Dad back to the CCH. Her reference to CCH was the second time in 15 minutes and the third time in two days that hospital personnel had mentioned this terrible place to us. I hated the thought of sending him back there.

When Lynette, Dad’s case manager, arrived, we had a tense and somewhat unpleasant conversation with her about Dad’s return to the CCH. When I told her that we didn’t like the care that he had received there, she said that we had alternatives. We could send him to a continuing care facility in Georgetown, some 50 miles south of Temple. When I told her that Georgetown wasn’t a viable option, she started some song-and-dance that S&W gave us options, and it was a valid option. Aside from the fact that we’d be unable to make multiple trips to the hospital during the day, I didn’t want my mother driving on the dangerous stretch of interstate highway that was in a perpetual state of construction. I would have preferred that Dad be transferred to the fourth floor at Memorial, but he was still too ill to move there, and they would not accept patients who received any sort of breathing support.

Dad returned to his room from interventional radiology at 11:00 A.M. The physical therapists stopped by at 11:30 A.M., but Dad refused to participate, and there was nothing that I could say to him that would change his mind. After that frustrating interaction, Mom and I left the hospital and went home for lunch. Before we left, I asked the therapist for suggestions of exercises that we could do with Dad between sessions to help build up his strength.

Mom returned to the hospital after lunch to find Dad sleeping, and he slept for most of the day but woke up shortly before Mom came home for dinner.

nodeal I returned to the hospital at 6:30 P.M., armed with a couple of small bottles of water. The physical therapist had told me that lifting the bottles while in bed would be good exercise for Dad. Unfortunately, he wouldn’t touch the bottles. I tried talking with him and shared some of his improved lab results with him, but nothing helped. I even tried to make a deal with him and told him that if he would exercise even a little, I would eat peas, which I detest. I still haven’t had any reason to eat peas.