delirium – Tale of Two Parents

Back at Scott & White Hospital. Oh, joy.

Published on July 10, 2018July 16, 2018 by mellowdee552 Comments

March 25, 2018. After last night’s disturbing phone call from Mom about Dad’s fall, I wanted to get an early start to Temple so that I could be there during Dad’s surgery. I was up by 5:30 A.M., called Mom 45 minutes later to let her know that I was coming, and left home at 7:40 A.M. Because of my early departure, and some good highway luck, I arrived at my parents’ home at 10:15 A.M. I quickly unpacked my car, drove to Scott & White Hospital, and made my way to room 566 in the south tower.

I had just missed the surgeon, who had stopped by to tell my parents that barring any emergency surgeries, Dad’s surgery was scheduled for that afternoon at 1:20 P.M. Shortly after I arrived, Dr. Karla Bolanos, Dad’s attending physician for the week, stopped by to visit with Dad. Dad was very charming and witty, giving her the impression that he was a cooperative patient. At this stage of the process, he actually was very cooperative because he had no idea what was in store for him.

The doctor said that Dad would have his first physical therapy session and evaluation the day after his surgery. Following the surgery, he would remain in the hospital for 2-3 days and then move to a rehab facility for two weeks of rehab. It was at this point in the conversation that Dad balked and said that this plan didn’t work for him. He had no intention of going to rehab; he was needed at home. Unfortunately, Mom seemed to agree with Dad. In an attempt to sell my parents on the notion of rehab, I related the story of their friend Sally and her experience with rehab after her hip-replacement surgery, but my parents were not swayed.

Shortly after Dr. Bolanos left us, I left the room to call Stan and my friend Rhoda, both of whom wanted an update on Dad’s condition. On the way to the lobby, I saw the doctor at the nurse’s station and spoke with her about Dad’s diuretics, his swollen legs, and I requested that she order an infectious diseases specialist to check Dad to see if he still needed the antibiotics to suppress infection in his lungs. She appreciated knowing about the diuretics but said that Dad would need to take suppression antibiotics for the rest of his life. Furthermore, she said that he needed the antibiotics because of his new heart valve. It seemed to me that he needed the antibiotics for a couple of good reasons. Because antibiotics can affect the kidneys, I had hoped that he could quit taking them, but the doctor dashed that hope.

When I finished making my phone calls, I returned to Dad’s room. Dr. Bolanos returned to the room a few minutes later and told us that they had noticed a spot on Dad’s heart that looked like a clot. Before they could operate on Dad’s hip, they would need to run some tests, which were scheduled for tomorrow. By now it was 12:30 P.M., and Mom and I were hungry and decided that we would leave Dad for an hour and go home for lunch. When we returned to Dad’s room, because his surgery was rescheduled for tomorrow, his NPO restriction had been lifted, and he was eating lunch and complaining about the food. Some things never changed.

At 3:30 P.M., an imaging tech arrived with an ultrasound machine to scan Dad’s legs for blood clots. She couldn’t tell us anything, and we assumed that we’d hear something soon from the doctor.

Shortly before 5:00 P.M., Mom and I left the hospital for home, having not seen any medical providers after the imaging tech left the room.

March 26. Mom and I arrived at Dad’s room shortly after 9:00 A.M. Dad said that he had been told that his surgery was scheduled for 1:20 P.M. Dr. Bolanos stopped by the room and told us that Dad was scheduled for a VQ scan at 10:30 A.M. I had never heard of a VQ scan, but I learned that it evaluates the circulation of air and blood within a patient’s lungs. The transportation tech arrived 10 minutes before the scheduled time and transported Dad to the procedure location. Not knowing how long he would be gone, Mom and I started getting antsy when he hadn’t returned by noon—especially because he was scheduled for surgery at 1:20 P.M. We didn’t want the surgery rescheduled for tomorrow. We also didn’t want to leave the room for lunch and risk missing the doctor.

Dad was returned to his room at 12:15 P.M., and a couple of minutes later, we were told that he was still scheduled for surgery today. Less than 30 minutes later, another transportation tech arrived to take Dad to the OR prep area. Mom and I were both allowed to accompany him. Dad wasn’t in favor of my coming, but I wanted to speak with the anesthesiologist. Dr. Daniel Stahl, the surgeon, stopped by to tell us about the surgery. He said that Dad would need three pins and that unless they found something different from what they had seen on the x-rays, the procedure should take less than two hours.

I told the anesthesiologist that following Dad’s previous two surgeries, he had had a heck of a time dealing with the anesthesia. For three to four days, he had been very confused and had had hallucinations of animals, insects, and water in the room. The anesthesiologist said that he had Dad for his second surgery in May 2015. He said that if this surgery lasted no more than 90 minutes, he could use a spinal tap. Dad would be aware of what was happening, but he wouldn’t have any pain, and he would not suffer the after-effects of the anesthesia. He said that he would confer with the surgeon and try using a spinal tap if we agreed that was the route that we wanted to take. He thanked me for the update on Dad’s history, and Mom and I hoped that we had found a solution to Dad’s post-op dramas. While we were speaking with the anesthesiologist, the nurses were having a heck of a time finding a vein so that they could type and screen Dad’s blood.

When the nurses had finished drawing Dad’s blood, Mom and I made our way to the OR waiting room. After waiting for about an hour in the freezing-cold room, we were pleasantly surprised to see Tom, my parents’ pastor. I don’t know how he found us, but pastors seem to know their way around hospitals. We had a nice visit with him, and during our discussion, I mentioned my concern about Dad’s reluctance to go to rehab. I hoped that Pastor Tom would be able to have a guy-to-guy talk with Dad sometime before he was discharged from the hospital. After talking with Mom, I learned that part of her reluctance to send Dad to rehab was because of the promise that my parents had made years ago to not put the other in a nursing home. I explained to her that he would be admitted to the temporary resident section of the skilled nursing facility, not the permanent resident section, commonly referred to as a nursing home. I think that she felt somewhat better about rehab after our discussion.

Just a few minutes after Pastor Tom left us, the surgeon arrived to tell us that the surgery had gone well. Unfortunately, because of Dad’s spinal compression, the anesthesiologist was not able to use a spinal tap and had to use a general anesthetic after all.

Oh, joy.

Rest stop on the road to recovery

Published on December 12, 2017 by mellowdee55Leave a comment

January 17, 2016, marked the 255th day of my Dad’s healthcare odyssey. Now seemed like a good time to take a timeout to review some of the major challenges of his journey. Also, I’m taking a bit of a timeout myself to prepare for Christmas 2017. I’ll continue with Dad’s healthcare story in my next post.

May 6, 2015: Dad enters the hospital for arterial valve replacement. The procedure went well.
May 15, 2015: After my mother returns home from a day at the hospital visiting Dad, she suffers a stroke. Now both of my parents are in the hospital.
May 18, 2015: Instead of being discharged from the hospital, the doctors inform me that Dad has bacterial pneumonia and severe sepsis with acute organ dysfunction. The drugs won’t be able to address the infection so the surgeon will reopen Dad’s chest to wash out the infection. Mom is discharged from the hospital, but cannot be alone for a period of 30 days.
May 28, 2015: Dad’s kidneys are starting to fail. Today is his first day of dialysis.
June 8, 2015: Dad has a tracheostomy.
June 25, 2015: Dad is transferred from Scott & White Memorial to Scott & White Continuing Care Hospital (CCH).
July 14, 2015: Dad is transported to the X-Ray department at S&W Memorial for an MBSS, which would assess his ability to swallow. Unfortunately, the test that we had yearned for yielded some disappointing results. In short, he was diagnosed with a high risk for aspiration. Adan, Dad’s speech therapist at the CCH plans to continue working with Dad.
July 15, 2015: On Dad’s 71^st day of hospitalization, he and Mom are told that Dad cannot be discharged from the CCH until he is deemed to be dialysis dependent. To obtain that diagnosis, he would have to be hospitalized and on dialysis for a total of 12 weeks.
July 22, 2015: Dad aspirates on his tube feed during dialysis. Early the next morning, the doctor calls my parents’ home to tell me that he can’t do anything more for Dad. He could have Dad transferred back to S&W Memorial hospital, but due to Dad’s age and illness, we’d probably opt to let him die.
July 30, 2015: The doctors tell Mom and me that Dad’s situation is grave and that he has no more than a 10% chance of survival. Two days later, the doctor increases Dad’s chances for survival.
August 7, 2015: Nurses start administering antipsychotic drugs to control Dad’s agitation.
August 13, 2015: Dad’s 100^th day in the hospital. Dad’s delirium now causes him to be restrained most of the time that Mom and I are not with him.
August 19, 2015: Dad gets his speaking valve and the pulmonary fellow requests a meeting with Mom and me to consult with us about Dad’s bleak future.
August 20, 2015: Dad is discharged from S&W Memorial to the CCH.
September 1, 2015: Dad’s delirium seems to be worsening, prompting the nurses to keep him restrained.
September 8, 2015. We’re becoming concerned about Dad’s Medicare hospitalization coverage, which will expire in 23 days.
September 18, 2015: It’s been 136 days since Dad’s surgery and the attending physician tells Mom that Dad has Candidiasis and will die. We are told to make nursing home or hospice arrangements.
September 24, 2015: We switch gears from preparing for hospice to preparing for home care. The nurses start training me to be a caregiver.
September 29, 2015: On Dad’s 148th day in the hospital system, and two days before Dad’s Medicare coverage is due to expire, Dad is discharged from the CCH to home care. The struggle to return home is successful, but Dad’s journey is far from complete.

Wrapping up our first month of home care

Published on June 27, 2017 by mellowdee55Leave a comment

October 26, 2015. I had hoped that we’d have an uneventful night, but shortly after 1:00 A.M. Dad started coughing. I could hear Michell encouraging him to use the Yankauer wand, but he refused and kept coughing that terrible wet cough. I finally got up and went downstairs to see if I could convince him to use it, but at 2:00 A.M. I opened a trach care kit, suctioned his secretions, and then returned to bed. When my iPhone alarm played its annoying wake-up ring tone at 3:30 A.M., I was too tired to get out of bed. I kept snoozing the alarm until 4:15 A.M. and started to work 15 minutes later with a much-needed cup of coffee.

Dad was slow to wake up this morning, too, which was OK for him because he didn’t have any early appointments. At 7:00 A.M. he was ready for me to administer his morning trach care and meds.

In addition to work, I had several administrative health care chores to address today. After 27 days at home, we were running low on meds, so I emailed Dr. Issac to have him order new prescriptions. I also needed to reschedule Dad’s wound care appointment. I don’t know what I had been thinking, but when this appointment was scheduled, I didn’t realize that it could conflict with Dad’s dialysis if we encountered any glitches with the dialysis session or transportation. Also, within the next few days, Dad would require a 30-day physical therapy assessment, which I scheduled with Kathleen.

When I had logged on to Dad’s My Chart medical portal account over the weekend, I had learned that thanks to a referral from Dr. Issac, Dad now had an appointment with a pulmonologist. Unfortunately, the appointment was scheduled for January 4, more than two months from now. When I called to see if I could schedule an earlier appointment, I learned that they were booked solid until the new year. I guess that explained the January 4 date, and that I wasn’t going to do any better.

We were running very low on Nepro. When I called American HomePatient to order more, the clerk asked me about the other items that I needed. I told her that I didn’t know what all I needed and was informed that I was supposed to place a single order for everything that I would need for the upcoming month. I had once told Dr. White that patients and family needed a playbook to understand how to navigate the hospital system. The same was true for home health care. The American HomePatient folks were very friendly, but a short bulleted list of guidelines, not to mention an order form, would have been very helpful.

My final call for Dad was to Scott & White Home Care to see how long we were covered by Medicare. I learned that we had received an initial 60 days of coverage. At the end of the 60 days, Dad would be reassessed for an additional 60 days of coverage. This was good information to know and it would have been nice to know it about 30 days earlier.

While I was working, Stephanie, a new nurse, arrived to check on Dad. Because she had not been here before, she performed a very thorough assessment of him, which I learned was the typical protocol for all first visits. After she left, Michell told me that Stephanie had also changed Dad’s trach dressing, which made me feel as uncomfortable as the time that my mother-in-law cleaned out my refrigerator. I should have administered Dad’s midday trach care and changed his dressing an hour earlier, but I hadn’t been able to take a break.

Several days earlier, our neighbor Barbara, had brought Dad some flowers and cake. Mom called Barbara to see if she could return her cake holder. While they were talking, Barbara asked about Dad’s condition and if he was swallowing yet. Mom told her, no, and then explained that we needed a referral from a pulmonologist, but we wouldn’t be able to see one until January 4. She and her husband are both doctors at Scott & White and Barbara said that she could help. Mom and I were hopeful that we might be able to expedite the process.

I was bone tired today, but I managed to eke out eight hours of work and sneak in a little nap. When I woke up, Mom and I drove to the HOP office to fill out an application for a paratransit pass for Dad. Their office was less than 10 miles from my parents’ home, and we thought that we could expedite this process by filling out the form in person. Unlike some websites that enabled you to download a PDF version of the application form, this one required you to request that they send you one by mail.

When Mom and I returned home shortly before 5:00 P.M., Dad was napping. We woke him for happy hour, but he said that happy hour wasn’t that much fun for him, and he went to his room to read the paper. He stayed there until Mom, Michell, and I had finished dinner. I knew that two days didn’t constitute a trend, but now Dad had seemed depressed for two days. Thankfully, he still wanted to play Oh Hell when we finished dinner. Michell won for the first time, but Dad was a close second.

We got Dad snug in bed by 8:30 P.M. He had suctioned himself pretty well while he was getting ready and I didn’t encounter any secretions during the nighttime trach care. I hoped that this was a positive sign for a good night’s sleep.

October 27. It was becoming apparent to me that I was clueless when it came to predicting good and bad nights for Dad. Although he seemed fine when he went to bed, within four hours, secretions had accumulated in his trach. As usual, he wasn’t too keen on suctioning himself at night. This combination of secretion build-up and his refusal to suction led to lots of uncomfortable coughing. Around 2:00 A.M, I heard him call for help. I ran downstairs and he said that he needed the urinal. It’s supposed to be placed on the bedrail, but tonight it was left in the bathroom. He hadn’t wanted to bother anyone, so he tried to get out of bed to get it and was partly out of bed when I entered the room. After Michell and I moved him back into bed, I trudged back upstairs to bed for a bit more sleep.

Michell and I woke Dad at 4:30 A.M. I took care of his trach and then Michell took over. He was ready to go by 5:45 A.M., but after we had waited for several minutes past his scheduled pickup time, I called the dispatch office to check on their status. They never answered the phone, but they eventually arrived shortly before 6:30 A.M.

A few hours later, I contacted Sue, the nurse practitioner at the dialysis center, and asked her about my request for Dad’s prescriptions. She hadn’t seen my earlier email to Dr. Issac and promised to place the new orders at once.

Although Dad had less fluid removed today than on Saturday, he was exhausted when he returned from the dialysis center. After I administered his midday meds and trach care, he slept for three hours. He was awake and ready to get up shortly after I logged off from work for the day, and he joined us for happy hour. He returned to his room while we ate dinner, and he was ready for a game of Oh Hell when we were finished. Mom was the big winner tonight, and once again, Dad came in second place.

October 28. Dad had another night of coughing. I got up a couple of times to check on him, but he seemed to be sleeping through it. I swear he could sleep through just about anything. I got up at 3:30 A.M. and started to work at 3:45 A.M. After several weeks working these crazy hours, my coworkers in India, Israel, and the UK had become accustomed to seeing me online a couple of hours earlier than usual. Depending on the location, they were now seeing me online during their morning to early afternoon instead of late afternoon to early evening. As nice as it was to have more time to meet with them, I hoped that we wouldn’t continue this schedule much longer. As convenient as my hours were for my coworkers to the east of me, it wasn’t as convenient for those to the west, like my manager, who worked in California. I was very lucky to have a job that enabled me to work while taking care of a family member.

Today was an off day for dialysis, so Dad didn’t need to wake up before 5:00 A.M. During a break from work, I took care of the trach care and meds, and then left him to Michell. During one of my meetings, Gale arrived and Michell updated her on the events of the past seven days.

Stephanie, the nurse, stopped by again today. I was concerned about Dad’s secretions and was afraid that he was still battling pneumonia. In addition to the suctioning at night and during trach care, he also suctioned himself with the Yankauer wand during the day. She listened to his chest and said that it was clear. She explained that the trach alone was enough to cause secretions and that the effects of pneumonia can last for months. He had a lot of issues, but she thought that he was progressing well on all fronts, except for the bed sore.

Kathleen, the physical therapist, came by and performed her 30-day assessment of Dad and formulated a new plan for the next 30 days. In the coming month, Dad’s goals would include transfers to the shower and the dialysis chair. Dad needed to be able to maneuver from a wheelchair to the dialysis chair so that we could change from the expensive ambulance transfer to the more affordable HOP paratransit bus. I was still nervous about Medicare coverage for the various therapies, including speech therapy, which hadn’t yet started. Kathleen assured me that if Dad progressed well in one area but not as well in others, Medicare wouldn’t stop all of the services—only those no longer necessary.

While I was still working, Mom went to the drug store to pick up Dad’s prescriptions. In the short time that she was at the pharmacy, her car battery died. Fortunately, I was a member of AAA and eventually she received service and was able to start the car and drive home.

During the afternoon, Dad was up for most of the day and joined us for happy hour, but rested while Mom, Gale, and I ate dinner. Gale mentioned to me that although he seemed physically better, she thought that Dad seemed sad. I didn’t want to hear comments like this because they only reinforced my concerns about him and reminded me of articles that I had read about occurrences of depression following ICU delirium.

We played cards again, and Mom won again. We started moving Dad toward the bedroom and his nighttime ritual at 8:15 P.M.

October 29. The alarm woke me this morning at 3:30 A.M. Having the alarm wake me instead of Dad was like a gift. It seemed that I had slept throughout the night—6 hours! I got up at 3:45 A.M., started the coffee maker, and was working by 4:00 A.M. Gale started waking Dad around 4:15 A.M. During trach care this morning, Dad gave me a good scare when he had a hard coughing jag while I was suctioning him. He seemed to get over it without any damage, except to my blood pressure. With a little assistance from Gale and me, Dad was ready to go at 5:45 A.M. While we were waiting for the ambulance he scared the bejeezus out of me again when he experienced another hard coughing spell. We had come too far for him to slip away from us again. He hadn’t coughed like this since he had been home, and few things scared me as much as these hard coughing spells.

This morning, the ambulance drivers were both women, which was a first for us. Dad’s blood pressure dropped during dialysis, so they stopped removing fluid early and just cleaned his blood. In the end, they removed about 820 ml—about half of the usual amount. The ambulance arrived at noon to bring Dad home, and surprisingly, the same two EMTs from the morning also brought him home. It was unusual to have the same EMTs on both ends of the trip. It was more unusual that both EMTs were women.

Dad was very tired when he arrived home and he needed more than the usual assistance to transfer him from the gurney to the wheelchair. Shortly after administering his midday meds and trach care, he was out like a light for three hours. One of my weekly chores was to keep the pill dispenser full. During my lunch break, I organized pills and called Sue for a couple more refills. It would have been nice if all of the prescriptions lasted the same length of time. By the time that I logged off for the day, I had worked for almost 10 hours, and I was wiped out.

We were experiencing Chamber-of-Commerce-type weather today and the four of us agreed that the patio was perfect for happy hour. The temperature hovered around 80 degrees Fahrenheit, with low humidity. We sat out on the patio for about an hour. After dinner, we were all ready for a game of cards—especially Mom, who won again. She seemed to be on a roll.

I had some trouble suctioning Dad tonight. It seemed that the tubing that I used to suction the trach kept hitting something, and I silently reprimanded myself for not changing his trach today. I don’t like to change out the trach on dialysis days, and now I was very tired, too. However, the thought that his airway might become obstructed during the night made it difficult for me to go to sleep, and I kept waking up because I couldn’t hear him through the baby monitor.

Good grief. I couldn’t sleep when he was coughing and I couldn’t sleep when he was quiet.

Caring for the man who would not sleep

Published on May 2, 2017 by mellowdee55Leave a comment

October 2. It was 2:00 A.M., and Dad was wide awake and wanted to get up. After Gale, our caregiver, called me for assistance, she resituated Dad in bed and helped him roll over on his side, although she noticed he didn’t need her assistance. To keep him on his side and more or less stuck in bed, she wedged a pillow behind him. I don’t know if he slept, but at 4:00 A.M., Gale paged me again when Dad tried to get out of bed, so the pillow didn’t do much to control him.

My parents’ bathroom was large, but the commode was located in a separate room, which was more like a closet. In his current condition, it was physically impossible for him to use the commode. American HomePatient (AHP) provided us with a bedside commode that we kept in the common area of the bathroom. Having it in a more open area enabled the aides to transport him to and from the commode, a contraption that he loathed. After helping him into the bathroom to use the dreaded bedside commode, Gale and I were able to convince him to go back to bed. Thankfully, he remained in bed until 8:30 A.M., at which time I administered his trach care and morning meds. I was still a rookie with the trach care and the process took about 45 minutes.

I received a call from Kathleen Devine (I loved her name.), who introduced herself as the home care physical therapist. She wanted to stop by to assess Dad’s strength to determine a plan for his occupational and physical therapies. Our schedule was wide open and she said that she would stop by before noon.

After a couple of trips to dialysis, we had realized that in addition to his extra trach, Dad also needed to bring a blanket, a box of tissues, and various other items. Gale told Stan that instead of Mom’s Elizabeth Arden tote bag that we were using to transport his dialysis accessories, Dad needed something larger and more masculine, like a duffle bag. Stan wasn’t sure what she had in mind, but he eventually found a gym bag that she deemed perfect for the task.

Gale checked out Dad’s bureau and closet. She marveled at how well his clothes were folded and organized, although I don’t know if the credit goes to Dad or Mom. With a little guidance from Dad, Gale picked out some clothes for him and dressed him for the day. Gale also made a slight design adjustment to Dad’s undershirt. Because his PEG tube extended out from his midsection, wearing an undershirt over the tube bent the tube, which, in addition to being uncomfortable, was not good for the PEG tube. With Dad’s permission and the precision of Edward Scissorhands, Gale cut a hole in his undershirt and fished the tube through the opening. When Dad wore a button-down shirt, the tube extended through the placket. The PEG tube wardrobe problem was solved.

By 9:30 A.M., Gale and I had transferred Dad to the wheelchair and Gale wheeled him outside on the porch. Dad could navigate the wheelchair pretty well by himself in the house, but he needed some assistance going through the thresholds to the outside. By 10:00 A.M., I insisted that he come back inside so that we could hook him up to the moist air. He wasn’t enamored with the thought of being tethered to the concentrator and nebulizer, but after Mom brought him the paper he seemed pretty satisfied to sit in his room to read it. He hadn’t read a newspaper since July.

At 11:45 A.M., Kathleen arrived. She was a no-nonsense transplant from New York and I liked her immediately. She watched as Gale and I transferred Dad from the wheelchair to the bed and back again. She told us that a physical therapist aide would stop by twice a week to help him stand and walk, and the occupational therapist would visit him once a week and work on his upper body and core strength. We agreed that Dad would have physical therapy on Monday and Wednesday and occupational therapy on Friday. When I asked about speech therapy to address his swallowing problems, she said that I would have to speak with Adan about swallow therapy.

A few minutes after Kathleen left, the doorbell rang again, and this time it was Paula, the home care nurse. According to the plan that we had established during Dad’s admission to home care, the home care nurse would visit us three times a week. Although I was glad to have the nurses stop by, I was also nervous that they would find fault with something that we were or were not doing. Paula told us that Dad’s bed sore, which started when he fell in May, was serious, and she suggested that we get some Mepilex border patches. She had a couple of extras in her bag but told us that they were expensive and that we should ask AHP to supply them for us.

When Paula left, I called AHP but was told that without a doctor’s order, Medicare would not reimburse them. To obtain doctor’s orders would require that I contact Dad’s primary care physician and schedule an appointment, and this activity was not high on my list of priorities, so I decided to buy a package myself. Also, when Gale and I snagged supplies from Dad’s room at the CCH, I grabbed a box of gloves, size small, which were fine for me but were too small for Gale. I logged on to Amazon.com and ordered the Mepilex patches and a case of medium gloves. Was there anything that this company didn’t sell?

After his busy day of visitors, and a tremendous lack of sleep, Dad finally let us put him back in bed and he slept for two glorious hours.

Shortly before 5:00 P.M., Dad wanted to get out of bed and visit with us while we partook of some alcoholic beverages. Happy hour at the Locke house had been a nightly ritual that he could now only watch. Before the surgery last May, my Dad’s Manhattans had been a highlight of the overnight visit to my parents’ house that my girlfriends looked forward to every year.

At 7:30 P.M., we began what was becoming our nightly ritual. I administered the trach care and the meds, and Gale changed out the tube feed bag and filled the new one with Nepro. Gale was quickly becoming a pro at winding the tubing through the Kangaroo pump, and I knew that I needed to start paying more attention to what she was doing. It was unfortunate that the bag did not hold enough Nepro to make it through the night. Fortunately, I guess, Dad didn’t sleep through the night anyway.

October 3. At 2:20 A.M., Gale woke to find that Dad was halfway out of the bed, which prompted her to use the baby monitor to page me. Gale and I maneuvered him back into bed, but he insisted that he was going to get up. I told him that if he didn’t stay in bed, I would get into the bed next to him so that he couldn’t escape. He said, “OK,” and scooted over. Two hours later, we were up and I had a dandy kink in my neck from sleeping halfway off of the pillow. Gale and I transferred Dad to the wheelchair and he wheeled himself to the sink in the bathroom, where he washed his face and brushed his teeth. As he held his hands and washcloth under the faucet, he said that this was the first time in five months that he had felt running water on his hands. Gale and I exchanged glances, too overcome to say anything in response. He neglected to mention that it had also been five months since he had brushed his teeth and washed his face. These milestones helped to put Dad in a great mood.

I administered his morning meds and trach care and Gale dressed him for dialysis. He was ready for the ambulance transport at 6:10 A.M., 10 minutes before his scheduled pickup time. Dad’s great mood diminished somewhat when the transport arrived at 7:20 A.M., 20 minutes after his session was supposed to start. He was eventually hooked up at 8:00 A.M.

During dialysis, Dad used oxygen tanks from the dialysis center, but this service did not include the moisture that he needed to keep his trach moist. In an attempt to compensate for the lack of moisture, Timothy from American HomePatient had provided us with several bibs composed of a porous non-woven material. The bib was placed between the trach and the oxygen source. The bib wouldn’t stay moist for more than 30 minutes, so we kept a small spray bottle in his dialysis bag, and Gale was vigilant about keeping the bib wet.

Dad stayed alert during the entire dialysis session, and he and Gale talked the entire time. I imagine that Gale would have appreciated his taking a little nap so that she could close her eyes. Dad’s blood pressure had dropped somewhat during dialysis, so the dialysis nurse stopped the session before the goal of 1500 ml was reached. Gale called the EMT service for a ride, and once again they waited for more than an hour for a ride home. We were starting to set some pretty low expectations for the EMT transport service.

After they returned home, Dad was tired and wanted to take a nap. During the two hours that he slept, Gale also slept. At 4:00 P.M., Dad was awake and ready to get up. Gale and I transferred him to his wheelchair and we went outside and sat on the patio for 90 minutes. He had been away from the nebulizer for almost six hours today, so I strongly suggested that he go back to his room. My husband, Stan, was still in town, and he visited with Dad until 7:00 P.M., when Mom served dinner. In addition to the baby monitor station in my bedroom, we also kept one of the stations in the dining room. Just a few minutes into dinner, we heard an unusual sound from the monitor. Gale practically leapt from her chair and ran to the bedroom and found my father on the floor on the right side of his bed. In addition to the oxygen, he was also receiving nutrition from the tube feed. All of this equipment was located on the left side of the bed, which meant that he was putting a strain on a couple of vital supplies by being on the floor. It astonished me that he couldn’t figure out that in addition to being too weak to stand, he was also tethered. Fortunately, Stan was there and he, Gale, and I got Dad up off the floor and into the wheelchair. Gale checked his PEG and looked for skin tears and I checked his trach. He hadn’t hurt himself, but he gave the rest of us a scare.

Gale stayed with Dad while Mom, Stan, and I finished dinner. I then sat with him while Gale ate. When she was finished, Gale started getting Dad ready for bed. After he was dressed for bed, Gale and I ran through our nightly routine of meds, trach care, and tube feed.

Starting at 10:00 P.M., he started trying to get out of bed. He might have been too weak to stand, but Gale thought that for a weak guy, he was pretty strong. He could really put up a battle when he wanted to get out of bed.

October 4. The baby monitor alarm woke me at 4:00 A.M. Gale thought that Dad sounded gurgly and thought that he might need to be suctioned. I agreed and after I finished suctioning him, he insisted that he wanted to use the house toilet. Gale and I tried to explain that he couldn’t use it but that we would take him to the bedside commode in the bathroom. To say the least, he became very upset. He complained that the commode seat was very uncomfortable, which was true. He finally relented, but then he didn’t want to go back to bed, so Gale got him up and prepared for the day. I promised Dad that I would order a seat cushion for him, which I did later in the day.

By 6:00 A.M., he was sitting in the wheelchair, attached to the moist oxygen, and reading the paper, and we were all happy.

After breakfast, I returned to Dad’s room and administered his morning meds and trach care and then excused myself to shower and get ready for church. At 10:20 A.M., my mother and I escaped to church. Our friends at church were anxious to hear about Dad. Sue, our friend who was the nurse practitioner at the dialysis center, said that Dad was a real chatterbox. She had been amazed by how much he talked during dialysis. The pastors and everyone else we told about Dad were thrilled that he was at home.

Shortly before we returned home from church around 12:30 P.M., Dad felt a little tired and wanted to go back to bed to rest. Gale mentioned to me that she had heard some noise coming from his stomach and told me that she was going to ask the nurse to listen more closely tomorrow.

My husband had been staying with us for the past week, but after lunch, he went back home to Houston. I don’t know how we would have managed without him and I hoped that we wouldn’t need his brawn while he was gone. For both of us, our vacation had now come to an end. I had set up my work computer in my parents’ office and planned to start back to work tomorrow at 4:30 A.M.

Tonight was another frustrating night of Dad trying to get out of bed. We had him ready for bed at 8:30 P.M., but he slept until 11:00 P.M., after which time he tried repeatedly to get out of bed. At 2:00 A.M., Gale used the baby monitor alarm to call me. Dad had scooted to the end of the bed and she needed help to raise him. He insisted that he wanted to get up. I explained to him that I had to go back to work in a couple of hours and that I wanted him to sleep until 4:00 A.M., which was when I would get up. He agreed to that plan, and the three of us slept for two more hours. I fantasized about six consecutive hours of sleep.

Day 148: Transitioning to Home Care

Published on April 18, 2017 by mellowdee553 Comments

September 29. Dad was visited by his nurses and respiratory therapists before 8:00 A.M. so that he’d be ready to leave by 8:30 A.M. to have the PICC line removed and the dialysis catheter changed. The ambulance arrived a little early and he was transferred to Interventional Radiology (IR) at S&W Memorial at 8:20 A.M.

Shortly after Dad arrived at the IR department, he tried to scoot himself off the end of the bed. When confronted by the OR nurse, Dad became combative and took a swing at him. In my whole life, I had never seen my father take a swing at anything bigger than a tree roach, yet it seemed to be a common occurrence during his hospitalization. He must have been impossibly frustrated, and I’m sure the cocktails of meds didn’t help his view of the world. As often happened at the CCH, Dad wanted to get up and use the bathroom, which was a physical impossibility. As the OR nurse and an aide helped him with the bedpan, Dad got a skin tear on his calf. During his 147 days of hospitalization, his skin had become very fragile and these skin tears were an all-too-common and disturbing occurrence. Dad finally settled down and his procedure was performed by Dr. Bradley Dollar without further incident. Dad was ready to return to the CCH by 11:00 A.M.

While Dad was having his plumbing changed out, I stayed at home so that I could meet our assistant from One On One and take care of a few things at WalMart with Stan. Among other things, we needed to stock up on washcloths, towels, and sheets. While we were at WalMart, I saw Sheila Rogers from Interim Hospice. After I had called her a couple of days ago about our change of plans from hospice to home care, she resumed her plans to move and was now picking up a few necessities for her new place. She was very gracious and supportive about the turn of events. I really liked Sheila. She was one of those people who seemed to exude compassion and kindness through her pores.

When Gale arrived, I showed her around the house and told her about our plans to have her stay in the back bedroom. Mom would sleep in the twin bed in the master bedroom, and I would stay in the guest room upstairs. Stan had purchased a baby monitor and we had placed the main station in the master bedroom and one monitor station in my bedroom and the other in Gale’s room. Gale immediately disagreed with the plan and said that her room was too far from the master bedroom to be able to attend to Dad at night. Instead, she suggested that she stay in the master bedroom with Dad and that Mom should stay in the back bedroom. It was a good call. We still kept the back bedroom as her home base, where she could keep her personal effects and use the shower. We set up an inflatable bed for Mom in a large room that was adjacent to the guest room. This wasn’t Gale’s first rodeo and she offered many good suggestions.

After getting Gale settled in, she and I headed to the CCH and arrived shortly before Dad returned from his procedure at Memorial. When he returned, I introduced Gale to Dad.

Maybe it was the 100+ questions that I asked her, but I think that Angela sensed that I was still a little unsure about changing out the trach. I was less confident than a baby Wallenda who was preparing to move from the safety of a net to a high-wire act across the Grand Canyon. She said that we could change the trach now. Although it could be a problem if you waited too long to change it, changing it more frequently than seven days was not a problem. Angela assured me that it usually took three trach changes to become comfortable with the process. This would be my third time. I had a camera with me and had Gale record the entire process starting with wrestling with the gloves through cleaning and repacking the trach. This time I had sufficient disk space. I was also glad that Gale was here to witness the trach-changing process.

Angela also showed us how to use and maintain the suction machine that we’d have at home. It was a loud contraption—much louder than the system at the hospital, and I hated it. She also gave me a care package of sorts that contained supplies to help us get started, including a couple of trach care kits.

While we were bonding with the suction machine, we noticed that Dad’s new dialysis dressing was seeping a lot of blood. The nurses tried applying pressure dressings to stop the bleeding but to no avail. The nurses eventually called on Dr. Anderson. To stem the bleeding, he had to cauterize the wound.

During the hubbub of activity around Dad, Marty stopped by and I stepped out of Dad’s room to talk with her. When I asked her about Dad’s prescriptions, she said that we were responsible for filling them and asked if I wanted her to fax them to our pharmacy. At the glacial rate at which things were progressing, I didn’t think that I’d have time to get to the pharmacy before they closed. I gladly accepted her offer to transmit the prescriptions.

Whenever the room was empty of CCH providers, Gale gleefully slipped into scavenger mode, gathering anything that wasn’t furniture or nailed down. It made perfect sense because most of the supplies would be tossed after Dad’s discharge. The collection of goodies probably didn’t require covert activities; Angela had provided us with everything we requested, and more. Fortunately, we had come armed with several empty bags.

I called the house and Mom and Stan were still waiting for the morning delivery of the hospital bed, respiratory equipment, and medical supplies. It was now after 3:30 P.M. and I was becoming concerned that Dad would be discharged and arrive home before his bed.

Marty had faxed Dad’s prescriptions to a Scott & White pharmacy near my parent’s house. Unlike CVS and Walgreens pharmacies, the Scott & White pharmacies were not open late, and I had to make sure that I picked up Dad’s prescriptions before they closed. At 4:30 P.M., I left Gale with Dad and went to the pharmacy. Dad’s prescriptions were ready, but I was a little unprepared for the $239.22 sticker shock. The culprit turned out to be Renvela, which retailed for $1250 for 45 packets. Before I could leave, the pharmacist wanted to meet with me to discuss the bag full of prescriptions that included meds to raise blood pressure, an antifungal, a statin, nausea, pain medicine, meds for delirium and sleep, and Renvela, the phosphorous binder. I’d have to make a spreadsheet to keep track of his meds, dosages, and times.

I returned home from the pharmacy just after 5:00 P.M. and the guys from American HomePatient had arrived a few minutes earlier and were transforming the master bedroom into our hospital room. Because transportation services are a low priority for ambulances, Dad and Gale had had to wait more than an hour for the ambulance ride home from the CCH. The wait time enabled us to sorta prepare the room. In addition to our special flooring and the shelving, we had also spent a pretty penny on everything that Medicare didn’t cover, like blood pressure equipment and an oximeter, bed pads, and all those linens. Just to set up the room cost us close to $700. We were lucky that we could afford it.

Dad and Gale arrived, via ambulance, at 7:15 P.M. Dad was glad to be home, but he seemed a little anxious. He hadn’t been home for several months, and his memories of home were jumbled.

Timothy and Jared from American HomePatient were still here and they showed Gale and me how to use all of the equipment. Jared demonstrated how to set up the oxygen and the nebulizer that injected moisture into the oxygen tube. Because Dad wasn’t breathing through his nose, he needed the added moisture to keep his air supply moist. Timothy then showed us how to set up the Kangaroo enteral feeding pump and tube feed. My head was spinning and I hoped that between the two of us, we could remember how to use everything.

After Jared and Timothy left, Gale and I studied all of the containers of meds, trying to determine what to give Dad tonight. Right off the bat, I pulled out the Haldol, Hycet, and Risperidone, and put them in another room. It probably wasn’t a good idea, but on my watch, he was going cold turkey and would never receive these drugs again. As it was, I still gave him five different drugs through his PEG tube. Gale unpacked the tube feed bags and set up his tube feed.

Because Dad didn’t get home until after 5:00 P.M., he had to be admitted by the S&W Home Health night nurse. Leo finally arrived at 10:00 P.M., and Mom went to bed after she led him to the bedroom. He was a trip, and Gale and I were pretty sure he had had a couple of cups of coffee. According to him, he was the expert because of the two letters after his name. The admitting process seemed to take forever and included an inspection of the house and a check of Dad’s vitals. Leo finally left shortly after midnight.

Gale and I prayed that Dad would stay in bed. Unlike the hospital beds, this one did not have rails at the foot of the bed. Fortunately, he slept all night—that is, if you call sleeping until 4:00 AM. all night.

Caregiver in training

Published on April 4, 2017April 10, 2017 by mellowdee55Leave a comment

September 26, 2015. I saw Angela, the respiratory therapist, a few minutes after I arrived at the CCH at 7:35 A.M. She said that after she set up a couple of more patients, she would return to Dad’s room to continue my training. Jennifer, the charge nurse, was also tasked with training me this weekend. Her instruction started with having me administer Dad’s morning meds. We started with the pills, which I was to crush and mix with water. I then drew up the liquid mixture into a syringe and emptied it into the PEG tube. The other two meds were powders: the Renvela was for his kidneys and the Beneprotein was a nutritional supplement. According to Jennifer, I had to mix the Renvela with water and then squirt out 1/3 of the mixture into the sink. The entire sachet of Beneprotein was injected into the PEG tube. After injecting all of the meds and supplements, I flushed the tube with lukewarm water to ensure that nothing remained. So far, so good.

After Jennifer left the room, Dad asked me about “all of the buildings that he was going to travel through.” I explained to him that to get home, he wouldn’t travel through buildings, but that his ambulance would take him home via the Loop and 31st Street. I drew him a bad, oversimplified map of the area and explained where everything was and the distances between them. He had been hospitalized so long that he was confused, thinking that there was a difference between our house and our home. He then told me that it would be prudent to get him a bedpan, so I called the nurse and left his room.

While waiting in the hallway, I encountered Dr. Smith and conferred with him for a few minutes. While we were chatting, he told me that I was pretty lucky because Jennifer was one of Scott & White’s top 25 nurses of the year. I had just met her this morning and had already concluded that she was very friendly, supportive, and professional. I also didn’t pick up any vibes that she was judging me for moving Dad to home care.

At 11:00 A.M., Angela returned, and my respiratory therapy training ratcheted up a notch. In addition to suctioning Dad today, she said that I would change out his tracheostomy tube. I had hoped to record the process with my camera, but I ran out of disk space before I was finished. Regardless of whether you were suctioning or changing out the trach, the process required a sterile environment. There was a specific way in which to open the kit and put on the gloves, which I thought would be my undoing. Putting on a pair of gloves so that you don’t touch and contaminate them was not as easy as you might think, and I felt like a complete doofus.

I had a tiny problem getting the trach tube into his throat, but I think it was because I didn’t insert it at the correct angle. I panicked a little; Angela took over, and it slid right in. She also showed me how to clean the trach that I had just removed and how store it for the next changeout. As if all those steps weren’t important enough, it seemed like the biggest lesson was that you had to ensure that you tightened the collar enough so that it wouldn’t come out, yet not so tight that you choked the patient. Being able to place two of my fingers between the trach collar and Dad’s neck seemed to ensure the correct fit. I was a little stressed out and I couldn’t believe that I would have to perform this procedure every seven days. Was it that long ago that I thought to myself that I couldn’t imagine having to change out a trach? Sheesh.

While I was sitting with Dad, Angela returned to the room with printed instructions about how to suction and change out a trach. Dad was sleeping, so I decided to read the entire document. I write technical documentation for a living, and although I’m not diligent about always reading it, this seemed like a good time to read the manual. I was glad that I did. When Angela stopped by again, I told her that the two other respiratory therapists had had me insert the tubing much further into Dad’s trach than the instructions advised. She told me that she had noticed that I had performed deep suctioning on Dad, but that it wasn’t necessary. When I changed my suctioning technique, I found that suctioning didn’t hurt Dad the way it did with some of the respiratory therapists. I was glad that Angela was now my trainer. I recalled how Dad had told her that she was different from the other respiratory therapists and how he didn’t like others, like Victor. Angela had me suction Dad the rest of the day, and by the end of the day, I was somewhat comfortable with the procedure, although I still had to psych myself up for it.

I was glad when it was time to go home for lunch.

After I returned to the CCH from lunch, Jennifer and I got Dad into the wheelchair. The next time that Angela came in to suction Dad, she noticed that he was slouched in the wheelchair. She said that he was too bent for suctioning and she would wait until he was back in bed and at a better angle. I made a mental note to myself that the angle of his neck was important when suctioning the trach.

I was by myself at the CCH for most of the day. Mom was at home preparing the house, especially the master bedroom, for Dad’s homecoming. Stan split his time between performing chores at the house and running endless errands.

If you spend any time at a hospital, you quickly learn that healthcare is a dirty business and the floor is difficult to keep clean. My parents’ house, including their bedroom, was carpeted with a beautiful sea green carpet. We were pretty certain that the carpeting would not survive Dad’s home care. One of Stan’s assignments was to figure out how to save the carpet. He eventually decided on chair mats. He bought out the supply of rectangular mats at Staples and Office Max and then worked out the arrangement of the mats in the bedroom. In addition to protecting the floor, the mats provided a relatively hard surface and protected the carpet from some of the heavy equipment and the wheelchair that would be brought into the room. He also purchased some shelving and boxes that we would need for storing medical supplies. Thank goodness my parents’ bedroom was large enough to accommodate everything.

By the time that the three of us met at home at the end of the day, we all felt like we had put in a full day’s work and were ready to make use of my parents’ bar.

September 27. I woke up at 5:30 A.M. and wandered into the kitchen to make coffee. I was surprised to find that my mother was already up and about. She told me that she had been awakened at 3:15 A.M. by a phone call from some college. The crank calls persisted until about 5:00 A.M. Before the annoying calls stopped, she had reached the point where she would answer the phone and immediately hang up. By the time that I woke up, she had done a lot of housework and was exhausted.

Mom and I arrived at the CCH at 9:00 A.M. Dad was awake and promptly told Mom that he had been trying to call her since 3:15 A.M. What Mom had heard was the audio caller ID announce wireless caller. The audio wasn’t all that clear, so you might imagine that it sounded something like Warless College, especially at 3:15 A.M. Mom might have appreciated the humor of the situation more if she had had 2-1/2 hours more sleep. My father could be a real pill with a phone. I don’t know if we ever knew why he was calling.

Shortly after we arrived, I went to the nurses’ station to see Jennifer. She said that she had been waiting for me to arrive so that I could administer Dad’s morning meds. At practically the same time, Dr. Smith arrived and we discussed Dad’s feeding tube and his invasive lines. I agreed with the doctor that because of its upkeep and the potential for infection, we wanted the PICC line removed. It was used to administer IV medication and he had already changed Dad’s prescriptions so that he was no longer receiving any IV drugs. Dr. Smith said that if we had an emergency, we could use the dialysis catheter while trying to start another IV or insert a new central line. He said that nephrology wouldn’t like this option, but in a pinch the dialysis catheter would work. During our discussion I learned that Dad had been tested for the Candida fungus five times and had tested positive only the first time. It sure would have been nice to know this sooner. If I had had more time to think about it, I would have resented being manipulated by Dr. Ciceri. I still shudder when I thought about how close we came to withdrawing care because of misleading information.

I put on a hospital gown over my Sunday clothes and administered Dad’s morning meds. Mom and I left for church at 10:20 A.M. and once again, Stan stayed and visited with Dad.

When Mom and I had attended church last week, we had a very sobering and tearful meeting with our good friends, who I referred to as the church ladies. Our friends at church had prayed their hearts out for Dad, and they were heartbroken about his prognosis. As upset as they had been last week, they were thrilled today. They and Pastor Tom praised God about the miracle that had occurred.

Stan had a good visit with Dad and left the CCH when I called him at 12:25 P.M.

I returned to the hospital at 2:00 P.M. to find that Jennifer and the aide were giving Dad a bath. When they were finished, Jennifer and I maneuvered Dad into the wheelchair. Jennifer thought that he was a bit weaker than yesterday and said that she wanted him back in bed in about an hour. It was a nice day, so after I had Dad cough up some secretions, we headed outside in the wheelchair. We strolled on all of the available sidewalks, which still wasn’t much of an outing, and then settled under the covered hospital entrance. While we were sitting out front, Stan and Mom drove up and visited. Stan could stay for only a couple of minutes because they had been grocery shopping and he had to get the perishables home. Mom and I visited outside with Dad until 3:25 P.M. Shortly after the three of us returned to Dad’s room, Jennifer, Hector, and I put him back in bed. Mom and I visited with Dad until about 4:30 P.M.

It had been another long day and Stan, Mom, and I were pooped. I had downloaded the Domino’s app to my iPad, so we ordered a pizza the 21^st century way. We had ordered three pizzas since I had been staying there, which is more than I had ordered in the last 25 years. I loved to make homemade pizza, but desperate times called for takeout.

Stan and I stayed up late to watch the total lunar eclipse (blood moon). While watching the moon, my dear friend Rhoda texted me to see how I was doing. I quickly called her to let her know about the miracle and our change in plans.

She was just over the moon!

Preparing for the other H word: Hospice

Published on March 21, 2017 by mellowdee553 Comments

September 21, 2015. Mom and I arrived at the CCH at 8:15 A.M. Alyssa, Dad’s nurse, told us that my conversation with Dad the previous night had calmed him down and that he finally went to sleep with the assistance of a sedative. While Dad was still in dialysis this morning, we wanted to obtain a list of local hospice providers from Marty. We also wanted to be sure that we arrived before the nephrologist, Dr. Concepcion, left for the day. We told the receptionist that we wanted to meet with Marty and Dr. Concepcion, and went to Dad’s room to wait.

During the past couple of days, Dad had seemed to be in a much better mood and talked about his plans after his return home. The more excited he became about going home, the more depressed and heartbroken Mom and I became. We hadn’t told Dad that he was going home to hospice. Mom and I couldn’t decide when to tell him, perhaps because we couldn’t bear the truth of our situation. I also couldn’t bear to think of how he might respond.

When Dr. Concepcion arrived, we were stunned to learn that Dad had asked him this morning about alternatives to in-hospital dialysis, including at-home dialysis. The doctor said that he had explained to Dad that it would take a lot of time to set up such a system and that he could also get dialysis in a nursing home. He said that Dad was quiet for a moment and then was adamant that he would not go to a nursing home. The doctor told us that at-home dialysis would not be a reasonable option for Dad. Mom and I wondered how Dad processed the conversation with the doctor.

As Dr. Concepcion left the room, Marty stopped by and dropped off materials about local hospice providers. She also told us that the CCH could also provide hospice services, which to Mom and me seemed like the worst of all possible alternatives. Marty proceeded to warn us that the team was concerned about us taking care of Dad in his final days, especially with his trach. She made it clear that the nurses didn’t think that Mom could take care of Dad. In her curt manner, she proceeded to tell us that we would essentially be on our own with Dad’s care and blah, blah, blah, and that the hospice nurse would stop by for only a short time each day. I felt like I needed an ACE inhibitor after most of her lectures.

I made a couple of phone calls and narrowed down the list to two hospice providers. Mom and I met with Sheila and Heather at Interim Health Care, which is located just down the street from the home of Mom’s friend Marilyn. I really liked these women and felt that Interim would provide great care, but Mom and I agreed that we should meet with someone from the Scott & White organization. When we returned to the CCH, we contacted Scott & White Hospice and scheduled an appointment for later that afternoon. Their office was across the parking lot, so their representative said that she would call me when she left her office.

Dr. Randall Smith returned today as the attending physician. When we met with him, he told us that Dad was still suffering from delirium. He told us that when he visited with Dad during dialysis, Dad told him that he wanted to clear his accounts and pay his bill. The doctor tried to tell him that he wasn’t involved with payments, but Dad wouldn’t listen to his protests. Instead, he handed the doctor what Dad said was a check, but was actually a napkin. We also spoke briefly with the doctor about the hospice plans. He said that it would be much easier for us if we would have hospice services provided in the hospital, but we wouldn’t entertain that suggestion.

We met with the representative from Scott & White and although she seemed very professional and they would provide a good service, we were sick and tired of this organization and wanted to cut our ties with them. I confess that I entered the interview with a somewhat closed mind and I didn’t note the name of the person whom we interviewed. I wish that I had because I owe her a debt of thanks. Knowing that we would need some very expensive assistance, she gave us the name of a company that provided 24×7 care. The company was One on One Personal Homecare, owned by Becky Crabtree. Her name resonated with me because I have Crabtrees in my family tree. I didn’t realize it at the time, but this referral was a godsend.

Shortly before Mom and I reentered Dad’s room, he attempted to get out of bed. Alyssa was able to convince him to stay in bed. A few minutes later, Andrea, the respiratory therapist, continued my trach care training. This task was well out of my comfort zone, and I performed it tentatively at best as Andrea talked me through the process. By the time that I had finished the trach care and suctioning, it was time for Mom and me to return home.

Mom and I discussed the day over drinks. She said that she thought that she needed to tell our closest neighbors about Dad. Because they had been so kind to us throughout this ordeal, she felt that we should let them know.

September 22. I originally hadn’t planned to stay in Temple yesterday, but I wanted to help Mom interview hospice care providers. So that I could arrive in Houston before noon, I left my parents’ house early in the morning. I was going to live at my parents’ home until my father died, and I needed to wrap up a few things and gather some of my personal items. Stan and I had already made plans for someone to take care of our cats, so I didn’t need to worry about them or the house. My father’s birthday was on October 6. I didn’t know why it seemed so important to me, but I held out hope that he would live to see 87. Based on estimates from doctors and friends, he might die on his birthday.

In our conversation with the doctors, we had stipulated that we wanted Dad to receive physical therapy while he was in the hospital. It might have been silly on our part, but we wanted just once to be able to get him into a wheelchair at home so that we could wheel him around his property and the house that he designed.

Mom arrived at the CCH at 9:15 A.M. Marty stopped by a little later to see if we had selected a hospice company and to confirm that we still wanted Dad to receive dialysis on Monday. Mom confirmed with her that we definitely wanted dialysis and told Marty that after she heard from me, she would provide her with our hospice selection. I had wanted to contact Interim first to ensure that they could accommodate us, and then I would give Mom the go-ahead to tell Marty and turn down the other provider.

Marty contacted Interim and faxed them the necessary information about Dad. She then called me to see when I would be available for training. I let her know that my plans had not changed and that I would be there Friday afternoon for two full days of training on Saturday and Sunday. After her call with me, Marty asked the charge nurse if she would have the nurses and respiratory therapists start training Mom on the tube feeds, suctioning, meds, and some of his personal care so that she could see what it would be like to care for him at home. It was like they were waging emotional warfare against us.

By 2:00 P.M., when Dad still hadn’t received physical therapy, Mom searched for the physical therapist and found Jennifer, her assistant. According to Jennifer, Susan, the physical therapist, had decided that Dad would not receive any more physical therapy.

Some time later, Mom was confronted by Susan and Marty, who insisted that it was not a standard practice to build up a patient before discharging him to hospice. They told Mom that her expectations were not realistic. Marty reiterated that taking care of Dad at home would be very difficult, especially with trach care and tube feeds. Mom defensively told them, “Don’t worry about me. We will hire whoever we have to!” Marty pressed Mom to know who she had hired. Mom told her that we had not hired anyone yet, but we would. When my mother became visibly upset, Marty apologized for questioning her, but she just wanted to be proactive to ensure that Dad would have everything that he needed. When Marty told Mom that the nurses would start training her to care for Dad, Mom said that Interim would provide a nurse. Marty challenged her and said that Interim’s nurse would not be there to tend to Dad’s daily needs. When Mom started getting upset again, Marty ended the inquisition and left. A few days earlier, Mom and I didn’t know much about hospice, but somehow the reality of the service wasn’t jiving with what we had heard. Whenever I heard stories about hospice, I seemed to recall references to kind caregivers. For some reason, I assumed that they were part of the hospice service.

Susan insisted that Mom and I would not be able to get Dad into a wheelchair, suggested a Hoyer lift, and proceeded to demonstrate its use to Mom, but Mom was not swayed. Eventually, Susan said that she would change her ruling and that Dad could have physical therapy. True to her word, she stopped by later that day and, with the assistance of a walker, Dad got off of the bed and pivoted into the side chair. As was often the case when Dad sat upright in a chair, he coughed up a lot of secretions.

After the gang of providers left, Mom and Dad had a good talk, but not about hospice.

Marty had arranged with American Home Patient to have the hospital bed and equipment delivered on Monday, September 28, four days from now. To transform their bedroom into a hospital room, Mom wanted to get rid of their king-size bed and have the room thoroughly cleaned. She planned to call her neighbor, Sharon, to see if she could provide the name of a housekeeper and also planned to call the Salvation Army to see if they could pick up the bed on Friday.

September 23. Michelle, Dad’s night nurse, found Dad awake at 4:30 A.M. with his legs hanging over the side of the bed. When she tried to assess his mental status, he refused to cooperate and told her, “I’m not going to do that anymore. You answer for me.” He then told her that when he left the CCH he needed to take the trash can that we kept in the closet. When he pointed to the closet where the trash can was kept, he pointed to the hall. Michelle didn’t think that Dad was trying to get out of bed, but when she asked him to keep his legs in the bed, he called her a troublemaker. He became a little perturbed with her when she raised the side rail on his bed, but he seemed to be sleeping by the time she left his room.

While Dad was in dialysis, Mom called the Salvation Army to schedule a pickup, but they could not come by until Monday. Fortunately, Good Will could accommodate her schedule and agreed to pick up the bed on Friday.

Before she left the CCH yesterday, Mom left her cell phone with Dad so that he could call her if necessary. He called her early in the morning to see if she was awake. He then called her later in the morning to tell her that someone had broken his electric shaver. He could be a pill with a phone.

When Mom arrived at the CCH, she spoke with Susan, the physical therapist. Susan and Mom agreed that Dad was too weak after dialysis for therapy, but she said that she would try to get Dad into a traditional wheelchair tomorrow.

I called Dr. Smith to ensure that Dad would indeed receive physical therapy tomorrow. Mom’s conversation with Marty and Susan the previous day had upset her, and she didn’t need the daily dose of aggravation. I couldn’t imagine what difference it could make if Dad received one or two days of physical therapy if it could make even one of his remaining days more enjoyable for him. Dr. Smith assured me that Dad would receive the promised therapy.

Mom called Adan to see if she and I could meet with him when I returned on Friday. I’m not sure why she needed to see him, but I was anxious to meet him.

Andrea, Dad’s night nurse entered his room around 11:30 P.M. and saw that he was attempting to get out of bed. When she questioned him, he said that he was “going to do stuff.” She explained to him that it was almost midnight and encouraged him to stay in bed, which he did for most of the night.

Oh, Candidiasis!

Published on March 14, 2017 by mellowdee554 Comments

September 18, 2015. Dad started his day in dialysis after having spent an uneventful night asleep. According to his early morning lab results, his WBC count was 12.1, up from 11.1 If only the WBC count was the worst of the lab results. Dad’s blood culture came back positive for Candida parapsilosis. When he saw the lab results, Dr. David Ciceri called Mom to tell her about the findings of the blood culture.

It being Friday, I was working in my home office in Houston. I was going to Temple the next day. This was an important weekend for me to be in Temple because I wouldn’t be returning for a couple of weeks. The stress of the past few months was taking its toll, and I was looking forward to this coming Wednesday, five days from now, when my husband and I would join my best friends in Wisconsin for the belated celebration of my birthday. The trip itself was a birthday gift, and we had been planning it since June.

Around noon, my phone rang, and the caller ID told me that it was my mother. We spoke every day, but I always initiated the calls. During the past 136 days, a phone call from her had indicated bad news. Today’s call was no exception. According to Mom, Dr. Ciceri told her that Dad tested positive for some fungus in his blood that was fatal, and could I come to Temple now?

After Mom’s phone call, I dashed off a quick email to my manager, telling her that I was leaving. I was somewhat packed for the weekend trip, so I grabbed what I could and left the house within 30 minutes of her call. The all-too-familiar drive to Temple seemed more like an eternity than three hours.

Dad returned to his room around 1:15 P.M. He had been a little confused earlier in the day but seemed to be in good spirits. His dialysis session had been pretty easy on him. He had no edema when he arrived at dialysis, so his blood was cleaned and only 342 ml of fluid was removed, which was about 15 percent of normal. Jennifer stopped by for Dad’s physical therapy session but was told by the nurse that Dad was having blood drawn.

When I arrived, I met Dr. Ciceri and he explained to me that Dad had something that sounded like “the Canada fungus.” He said that they planned to replace his dialysis catheter and his PIC line. The doctor had also started Dad on an antifungal. He said that he requested a TTE (transthoracic echocardiogram) for later today. I didn’t understand the significance of most of what he said, but I clearly understood what he said next. He said that Dad’s prognosis was extremely poor, that he probably had one to two months to live, and would most likely die in a nursing home.

The doctor went on to say that given Dad’s prolonged illness and advanced age, as well as his current condition, it was extremely unlikely that Dad would ever improve to the point that he could go home. As we discussed options with him, Mom was adamant that Dad would not want to go to a nursing home. With so few choices, we finally ended this terrible conversation with a plan to bring him home on hospice care. The doctor said that having Dad at home on hospice care would be difficult and would require that Mom and I be able to care for him. After assuring him that home was the only option for us, the doctor said that he would instruct the nurses to start training me tomorrow. In retrospect, I can’t believe how fast we made this decision to abruptly shorten my father’s life.

I don’t know how we did it, but we visited with Dad for a couple of hours before heading home for the evening. Mom and I were shell-shocked and there were more than a few tears shed over our drinks that evening.

September 19. Dad seemed to be in good spirits when Mom and I arrived this morning and announced that he was retiring from this place, adding that he figured that he had another 10 years left in him. His voice also sounded good and he seemed to be handling his secretions with little difficulty.

Mom and I had been adamant that we could not move Dad to a nursing home, but I thought that I should give our knee-jerk decision a second thought. When we spoke with Dr. Ciceri this morning, I asked him whether a nursing home might prolong Dad’s life by months or years. He said that a nursing home might extend Dad’s life by a couple of months. He explained that dialysis was tough on patients in their 80s and 90s. When I asked him if it would be possible to extend Dad’s time at the CCH so that I could take my trip, he said that they should be able to accommodate that request. Looking back, that request was probably one of the more selfish and embarrassing moments of my life.

We concluded our conversation with Dr. Ciceri by telling him that he was one of only a couple of doctors at the CCH that we trusted, the other doctor being Dr. Smith. Coincidentally, he and Dr. Smith were partners. He explained that he and Dr. Smith were very similar, but that Dr. Smith was much more of an optimist. He liked to think of himself as a realist.

After Dad and I exchanged morning pleasantries, he initiated a couple of very strange conversations. He spoke at length about a dialysis tech by the name of Penny Nickel. When I challenged him, he insisted that such a person really did exist. I wished that we had spent more time talking about the phantom Penny, because the following conversation was somewhat shocking and very disturbing. Dad told Mom that he needed to know the names of her other children. My parents started dating shortly after high school, were married in their early 20s, and I’m their only child. At first, my mother thought that he was kidding, but he was very serious. He assumed that he would have some financial responsibility for these other offspring and so he needed to know what he was dealing with. No matter how Mom protested, he insisted that she was lying. We finally diverted his attention to another subject.

Shortly before noon, Andrea, the respiratory therapist, stopped by Dad’s room to demonstrate how to suction Dad and perform routine trach care. She told me that she would have me perform the trach care when I returned this afternoon.

When Mom and I returned home for the day, Mom was very upset that Dad believed that she had had other children. She said that she couldn’t bear the thought of him dying thinking that she had lied to him about other children.

Mom and I were having a difficult time living with our decision, and we tried to think of alternatives to our dreadful plan. We found a website that addressed home dialysis. We thought that perhaps we could have Dad at home and extend his life with dialysis. When I searched the website, I learned that Scott & White provided home-based dialysis. Mom and I decided to talk with the nephrologist and Dr. Ciceri tomorrow to see if we could explore other alternatives.

September 20. Mom and I arrived at the CCH shortly after 9:00 A.M. I located the doctor and told him that Mom and I wanted to discuss some other options, such as home-based dialysis. Without skipping a beat, he said that this was a bad idea. Among other things, he said that this option would be expensive because Medicare would not pay for dialysis for a hospice patient. He said that he would speak with Dr. Concepcion, the nephrologist, for his recommendation. Regardless of their recommendations, our plan was for Dad to continue dialysis treatment and physical therapy until he was discharged to hospice.

Dad was sleeping when we entered his room, but it was obvious to us that he had been awake earlier in the morning. Everyone we encountered mentioned some earlier conversation with him and that he seemed to be in a good mood. He finally woke up just before Mom and I left for church. Before we left his room he reminded Mom that he still wanted the list of her other children.

After church, we spoke with our friend, Sue, about at-home dialysis, and she agreed with the doctor that this was a bad idea. She said that the training would take four to six weeks and that the patient also has to come to the dialysis center each day during the training. She recommended that we stop Dad’s tube feed when he returned home. Her suggestion seemed a little cruel, but she explained that continuing to administer nutrition would only cause swelling and discomfort and would ultimately shorten his life. She thought that we might prolong his life by one to two weeks without the nutritional support.

After church and lunch, we returned to the hospital around 2:30 P.M. We were in Dad’s room for only a few minutes before he initiated another lively discussion about Mom’s other children. It took me some time, but I finally convinced him that there weren’t any other children.

With the help of the nurses, we got Dad into the Stryker cardiac chair around 3:30 P.M. The weather was unseasonably nice, so I took him outside. The warm weather and breezes lulled him to sleep in about two minutes. I wheeled him all over the hospital, but he never woke up. Around 5:00 P.M., Pam, today’s respiratory therapist, stopped by to teach me how to clean and suction the trach. It was a little nerve-wracking, but I accomplished the task without waking him. Forgetting that Dad had been able to sleep through all sorts of torturous procedures, I considered my first attempt at trach care to be a phenomenal success. Mom and I finally left the CCH around 5:40 P.M., and Dad never woke up.

After we returned home, I had a come-to-Jesus meeting with myself and reached an obvious decision: I couldn’t travel to Wisconsin with my friends and leave my mother to deal with Dad’s situation. I wrote the painful email message to my friends, telling them that my father was going to die in hospice care and that we’d need to change our plans. They knew my parents and were distressed when they read the terrible news. One of my friends had been my wing woman when Mom had her stroke. It was hard to believe that this ordeal was going to end like this.

My phone calls to my husband were a blur of changed and new plans. He and I had both planned to travel to Wisconsin, and he helped cancel our travel plans. Because we had already planned vacation time for September 25 through October 1, we’d spend that time in Temple with my parents.

At 9:40 P.M., I was awakened by the house phone, and I ran to answer it before it woke Mom. As far as we were concerned, there was nothing worse than a nighttime phone call. My parents’ phone system had an audio caller ID. My heart practically stopped when I heard it announce that the call was from Scott & White. The call was from Jeliza, Dad’s nurse. According to her, Dad insisted that he wanted to go home and that he had seen Mom in the hall. He kept calling out for her, and the nurse couldn’t calm him. She hoped that my mother or I might be more successful. Jeliza held up the phone to Dad’s ear while I explained to him that we had been in his room until 6:00 P.M., but that he had been asleep. He asked me when we would return to see him again, and when I said, “tomorrow,” he asked if we’d come by early. When I told him that we’d see him after dialysis, he said that he wasn’t going to dialysis anymore and that he would go someplace else. I explained that going someplace else would require advance planning and that we couldn’t make alternative plans on a Sunday night. I promised him that Mom and I would be there and that I’d visit with him before I left for Houston. He agreed to that plan and we said good night. The nurse took back the phone and thanked me for talking with him.

Snatching defeat from the jaws of victory

Published on March 7, 2017 by mellowdee55Leave a comment

September 13, 2015. While Stan, Mom, and I were eating breakfast, we spoke about Dad, our anxiety about his medical coverage and how to make the best use of his remaining coverage. We made a list of questions and requests that we wanted to address with the doctor today:

As long as one of us was in the room with him, we would loosen his restraints.
As long as we were signing all the consent forms, he didn’t get to decline physical therapy any more than he could decline antibiotics or any other treatment.
We wanted him in some sort of chair every day, for as many hours as possible.

As a follow-up, I wanted to know if any of the providers was concerned about Dad’s rising WBC count.

Mom and I arrived at the CCH around 9:00 A.M. Dad was still sleeping, but some of the lights were on in his room and once again he was restrained and his call button was out of his reach. I held his hand for a few minutes while he slept. I wanted him to wake up, so I found a cloth, soaked it in warm water, and placed it over his eyes, which did the trick. After he woke up, we chatted about typical morning topics, like the weather. He was a bit disoriented about where he was for a couple of minutes, but we finally got into the groove and talked about the flowers in my parents’ courtyard at home.

He told John, his nurse, about their Angel Trumpet plant and how he and my mother first saw its flowers when they returned from a trip. Dad started in the middle of the story and I’m sure that John didn’t understand all of what Dad said, but I knew what he was talking about. I wondered how many conversations like this one were considered nonsensical.

John told us that Dad’s blood pressure had dipped a couple of times last night. At the first occurrence, they administered Lopressor, but the second time, they were able to remedy the situation with a bolus push of saline. I don’t know if it made any difference medically, but I always preferred the saline bolus over vasopressors. In simple terms, the saline bolus adds more fluid to the blood, which increases the pressure. It’s probably not an ideal situation for dialysis patients, but I had never heard anyone mention that as a concern or a risk.

Dr. Brito, the attending physician, stopped by and spent a long time charting on the terminal in Dad’s room. She could tell from our conversation that Dad was lucid and engaged. I told her that I had asked John this morning if he would loosen the restraints while we were in the room. After listening to our conversation and knowing that Dad’s nasal feeding tube was gone, she said that they would discuss removing the restraints during rounds.

Stan arrived around 10:00 A.M., and Mom and I left for church about 15 minutes later. When we saw Stan after church, he said that he and Dad had had a nice visit and that John had removed Dad’s restraints around 11:30 A.M. Dad’s blood pressure dropped some while Stan was there, but he said that they planned to monitor him and had not started any medication—namely vasopressors.

When Mom and I returned to the CCH after lunch, Dad was dozing, but he woke easily. We chatted some more about hospital rules and about how he had to stay in bed unless supervised by hospital personnel. Before our conversation was over, he fell asleep and snoozed for about 30 minutes. John stopped by, and when we asked him about the possibility of getting Dad out of bed, he said that he would be glad to put Dad in the Stryker chair later in the day if we were there. Dad spent an hour or so in the chair and was in good spirits for the rest of the day.

Mom and I returned home without having an opportunity to share our demands with the doctor.

September 14. It was Monday and Dr. Ciceri was this week’s attending physician. I had never met him, but Mom knew him from Dad’s first stay at the CCH in June. Dad had dialysis this morning, so I worked from my parents’ home until lunchtime. Mom arrived at the CCH at 12:40 P.M., and I joined her 30 minutes later. We learned that Dad had had a rough time during dialysis today. About an hour into his session, his blood pressure dropped. In addition to the Midodrine that Suzanne, his dialysis nurse, had administered prior to starting his session, she also administered Albumin via an IV during the entire session. Shortly thereafter, he had experienced tachycardia and required Levophed. When his situation still hadn’t improved, Suzanne contacted the nephrology fellow and he had her end the session 40 minutes early. Dad looked pretty lethargic when he was returned to his room. When I asked about the results of his morning lab work, I noted that for the first time since August 19, his WBC count was elevated out of the normal range.

I wanted to speak with the nephrologist to see if there was any way in which to make dialysis sessions more tolerable for Dad. I asked Michelle, Dad’s nurse, to see if Dr. Concepcion, the nephrologist, was still in the building. She called the dialysis lab and learned that he and his fellow had left the building earlier this morning. At 1:45 P.M., she paged Dr. Ciceri for us and told us that he would stop by to see us later.

At 1:55 P.M., Marty and Dr. Ciceri stopped by to talk about Dad’s current status and our request to have him transferred to the VA hospital. After Marty had confirmed Dad’s eligibility to receive VA medical benefits, Dr. Ciceri spoke to someone in the admissions office at the VA hospital. Because Dad had received a vasopressor during dialysis today, he wasn’t considered stable enough to transfer. He needed to be off of vasopressors for at least 24 hours. The doctor said that he would reevaluate Dad’s condition tomorrow.

Because of Dad’s low blood pressure, his physical therapy session was canceled. Dad was very lethargic during most of the day. At 2:15 P.M., Brenda, a tech, administered a bedside EKG. Dad perked up somewhat during the late afternoon and seemed to be in good spirits.

Mom’s friend, Marilyn stopped by with some books. She and Mom visited briefly in the CCH lobby, and Mom went home shortly after Marilyn left.

September 15. Mom arrived at the CCH at 8:40 A.M., just as Dad was just waking up. He seemed much different from the lethargic and ill-looking person he had been the previous day. He had been awake for only a few minutes when Jennifer arrived for his physical therapy session. He told her that he was feeling good and that he had no complaints. She had him stand and to pivot and sit and stand from the edge of the bed. At the end of the session, she was able to situate him in the Stryker cardiac chair. Jennifer was pleased with his attitude and his progress, and so was Mom. Jennifer finished her session with Dad at 9:20 A.M., and he remained in the chair until 2:00 P.M.

Every morning, the doctor, nurses, or both, performed a short assessment of Dad’s mental status. From the third week after he entered the Scott & White system, he had been unable to tell the medical providers the name of the president of the United States. Although there might have been a few days in which he couldn’t remember, I suspect that most of the time he was being stubborn. He wasn’t a fan of President Obama and forgetting his name was a personal protest of Dad’s. I sometimes wondered if his refusal to acknowledge the president affected the assessment of his mental status.

Dr. Ciceri stopped by and told Mom that he had ordered several tests. He also shared the good news that Dad was now off the vasopressors.

Dad had been complaining about an echo in his hearing aids, so Mom took his hearing aids to be repaired. Before she left, she and Dad had a crazy discussion about the location of the audiologist. His delirium turned their conversation into a no-win situation for Mom, and she eventually left to complete her errand.

Mom contacted Gina, her hairdresser, to see if she would come to the CCH and give Dad a haircut. His hair had become long and scraggly, and Mom couldn’t stand it. When she told Dad, he objected, saying that he would wait until he could see his barber. Mom went to the nurses’ station to borrow a hand mirror. All it took was one glance at himself in the mirror and the discussion was over. Gina would stop by next Thursday, nine days from now.

Dad hadn’t been very successful at suctioning himself today. Shortly before Mom left for the day, she noticed that the sound of the suction machine seemed different. At the time, several nursing students were working at the CCH. Mom latched onto one and had him look at the machine. The young nursing student was able to fix the problem, and Mom thanked him profusely, calling him a techie. After the nursing student left, Dad was much more successful at clearing his own secretions.

September 16. Dad was feeling pretty good again this morning, and coincidently, his WBC count was on a downward trajectory. He had now been off of Levophed for over 24 hours. The nephrologist had planned to remove a lot less fluid than usual, so it seemed that the day was getting off to a great start. Dad required Midodrine a couple of times during his dialysis, but he tolerated the session fairly well.

When Mom learned that Dad had been off of the vasopressors for 24 hours, she asked Marty when he would transfer to the VA hospital. Marty told her that she would send the updated information to the VA hospital but the VA hospital would make the transfer arrangements. She would let Mom know more about his transfer as soon as she knew.

Now that the transfer seemed like a done deal, Mom told Dad. They had a somewhat strange conversation because of Dad’s confusion about where he was and where he would be going.

During Dad’s physical therapy session with Jennifer, he told her that he had a bit of an upset stomach, but other than that, he had no other complaints. Although he became somewhat fatigued near the end of their session, she was able to get him to complete several exercises. When they were finished, she helped him into the Stryker cardiac chair, and left him with Mom.

Mom had an afternoon appointment with Dr. Ebert, her cardiologist. The doctor wanted Mom to start taking blood thinners again. Mom had been taking Xarelto when she had her stroke in May. During her hospitalization, Dr. White, her attending physician, told her to stop taking it for at least three weeks, and the neurologist had recommended that she stop taking anticoagulants altogether. Dr. Ebert now wanted to prescribe Eliquis, a different anticoagulant. The thought of her taking blood thinners again concerned me, but Dr. Ebert had been pretty cool and honest with me when I met her in May. I had to trust some doctor, but it seemed as if the specialists focused on single organs and not the whole person.

Shortly before Mom left the CCH for the day, Adan dropped by Dad’s room and gave Mom the name of the speech pathologist at the VA hospital and assured Mom that she was great. As she left, Mom felt pretty good about the day and optimistic about getting Dad transferred from the CCH before his acute medical coverage expired in 15 days.

September 17. Yesterday had seemed like such a good day and so full of promise for the coming days. We were ready to build on yesterday’s progress and see Dad transferred to the VA hospital.

During dialysis, Dad had a pretty strong cough. Although he was able to cough up and clear a lot of thick mucus with his Yankauer, he still required periodic suctioning from the nurse and respiratory therapist. The constant suctioning support was a disappointing indication that he was still nowhere near ready to have his trach red-capped. Although Dad needed some Midodrine during dialysis, he didn’t require a vasopressor, so he would still be able to transfer to the VA hospital. Dr. Ciceri thought that Dad’s mental status was pretty good, although he still couldn’t name the president. Dad had not had any fluid removed during dialysis, so he felt a little better than usual when dialysis was over.

Dad’s heart rate became elevated during the day and when Jennifer stopped by for Dad’s physical therapy session, she was told by the nurse that he could have only bed exercises. Mom asked Jennifer if she would come back later during the day for another session. She said that she would see what she could do, but she didn’t return.

The abbreviated physical therapy session wasn’t nearly as disappointing as the visit from Marty. Marty reported that her counterpart at the VA hospital, Tracy, told her that the hospital was on divert status for dialysis beds. This meant that they could not admit another dialysis patient. Until they could, Dad would not be eligible for a transfer. Marty assured Mom that she would continue to check on the diversion status. I didn’t hold out much hope that a dialysis patient would leave the VA hospital within 15 days.

Sorta better, but not so much

Published on February 28, 2017 by mellowdee551 Comment

September 8, 2015. Before Mom arrived at the CCH, Stacy, Dad’s nurse, informed the physical therapist that the doctor didn’t want Dad to receive physical therapy today because of his hypotension. Dad’s blood pressure had been low since his dialysis session yesterday. Dad’s WBC count was still within the normal range, although in four days it had inched upward from 6.9 to 9.2. The assumption was that as long as his WBC count was within the normal range, his hypotension was not caused by an infection.

When Mom arrived, Dad was in good spirits and they had a nice visit before she had to leave for a couple of appointments with her own doctors. She met today’s attending physician, Dr. Carl Boethel, and had time for only a brief visit with him before she had to leave. She learned that the results of Dad’s blood cultures had come back negative. We never really understood the significance of the blood cultures, but we always welcomed negative results.

During the weekend, Mom, Stan, and I had tried to brainstorm some alternative solutions for Dad’s diminishing Medicare coverage. It finally dawned on us that Dad was a veteran of the Korean War, and the VA hospital was located between my parents’ home and church. Instead of fighting the practically impossible odds of getting him admitted into the SNiF before his benefits expired, we thought that we’d see if we could get him transferred to the VA hospital. On the day that we had left Memorial, I had overheard a conversation about a patient being transferred from Memorial to the VA hospital. I recalled thinking that I hadn’t thought that the VA hospital was an option. If transferring from Memorial to the VA hospital was an option, we hoped that transferring from the CCH to the VA hospital was also an option. When Mom arrived at the CCH, she told the receptionist that she needed to speak with Marty, but Marty was home taking care of a sick child.

When she returned from her appointments with the neurologist and dermatologist, Mom asked Dad if he had met with the physical therapist. When he said that he had not seen her, Mom intercepted the therapist when she exited from the adjacent room. It was then that Mom learned about the doctor’s orders to suspend therapy for the day. Mom and I were very concerned about Dad’s weakened condition and Mom was not happy that he had remained in the bed all day. Both of my parents wanted Dad to get out of bed and onto the chair. Mom tried to get the nurses to move him to the chair, but to no avail. The fact that he had been restrained since Mom left for her doctor’s appointment didn’t help their mood either.

Mom undid Dad’s restraints a couple of times during the remainder of the day so that he could use the Yankauer, but he had a difficult time handling it and tore it apart.

As if he knew that he was needed, at 4:00 P.M. Pastor Don called Mom to see if he could stop by for a visit. He arrived at 4:45 P.M. and the three of them had a nice visit. Visits from men outside of the medical industry seemed to have a calming effect on Dad and diminished his delirium during the visit.

With all the drama surrounding Dad, it would be easy to forget about Mom’s issues. In addition to her recent stroke, she had also been battling bouts of skin cancer. I was pleased when I learned that she received gold stars from her dermatologist and neurologist.

September 9. Today was my wedding anniversary and I was at home in Houston with Stan. At the CCH, Dad woke up disoriented, and when he arrived at dialysis, Suzanne, his dialysis nurse, thought that he seemed very confused. Statistically, it wasn’t much different, but his WBC count had ticked up by the smallest amount. Although his WBC count was still within the normal range, I was apprehensive about the trend. It seemed that I was the only one who was concerned, and I was 160 miles from the action.

Mom was able to spend a few minutes talking with Dr. Whitney Prince, today’s attending physician. She told Mom that Dad was scheduled to receive the PEG tube tomorrow.

After Mom left for the day, Andrea, Dad’s night nurse, found him with his legs hanging out of the bed, which was practically his default position. The way that he kept sliding down the bed, you’d think that he slept on silk sheets. Other than that little intervention with Andrea, Dad slept through the night without any drama.

September 10. Because of his scheduled PEG placement today, Dad was NPO when the morning shift started. While Dad was waiting for his transfer to Memorial for the procedure, Marty told my parents that she had faxed his clinical records to the Marlandwood West nursing facility. According to Marty, they told her that because Dad was taking antibiotics, they could not accept him. She also said that the dialysis center would prefer that he require less suctioning before they would accept him. The hand restraints were also a blocker. Unfortunately, we couldn’t make Dad understand the problems that he caused with his repeated attempts to get out of bed. He now had only 22 days of hospitalization Medicare coverage. We hoped that the VA hospital would turn out to be a viable option.

At 10:30 A.M. the Scott & White paramedics arrived and transported Dad to the Interventional Radiology (IR) department at Memorial. It seemed that he didn’t have a set time on the IR schedule and Dad had to bide his time until 1:15 P.M., which was when they prepped him for the procedure. The procedure went well, and he finally returned to his room at the CCH at 3:40 P.M. My mother was told that he still had to use the nasal tube for another 24 hours, and then he should be able to start using the PEG.

Mom stayed at the CCH for a short time after Dad returned before she went home for the evening.

September 11. At 3:30 A.M., Andrea, Dad’s night nurse, discovered that Dad had disconnected the tube from his new PEG. She didn’t notice any visible damage to his abdomen as a result of his handiwork, and she reconnected the tube. He eventually went back to sleep and slept until his nurse woke him for dialysis. Suzanne, the dialysis nurse, noticed that he had thick white secretions, and although his WBC count was still within normal range, in two days it had inched up to 9.9 from 9.3. In the period of a couple of weeks, his WBC count had increased from 6.5 to 9.9. I understood that I had to look at the whole person and should not concentrate on the numbers, and blah, blah, blah, but the trend of these lab results made me a little nervous.

Dr. Whitney returned today as the attending physician and she stopped by to assess Dad during dialysis.

When Mom arrived, she noticed that Dad was tightly restrained to his bed. When she asked why, she was told that Dad kept trying to pull out his trach. Dad’s speech was slurred and Mom could barely understand him. His oxygen saturation had been low, so his speaking valve was removed, which made communicating with him even more difficult. Speaking valves block a small amount of air intake, so if he wasn’t getting enough oxygen, removing the speaking valve could solve the problem.

Jennifer arrived in the late afternoon for his physical therapy session. At first, Dad said that he didn’t want physical therapy today, but Mom persevered and he participated. Once he got started, he seemed to enjoy the session. After he performed the bed exercises, he was able to sit on the edge of the bed and move around on the bed and swing his legs. Before Jennifer left, she and the nurse put Dad in the Stryker cardiac chair and he slept in the chair for about an hour, with his hands restrained to the chair.

Mom was a little frustrated with the day. According to the whiteboard in Dad’s room, he was supposed to have the nasal feeding tube removed today, but John, Dad’s nurse, was hesitant to remove it. Finally, at 4:00 P.M he started the tube feed through the PEG, but he still didn’t remove the nasal feeding tube. Mom had also wanted to talk with Marty about having Dad transferred to the VA hospital. Unfortunately, Marty didn’t come to work today so Mom would have to wait until Monday to talk with her. At 4:45 P.M., Mom found John and told him that she was leaving for the day.

I had left Houston after work and arrived at my parents’ home in time for an update on Dad and a much-needed glass of wine before dinner.

September 12. Mom and I arrived at the CCH at 8:00 A.M. Dad was still restrained and his call button was on the floor. John, Dad’s nurse, told us that his heart rate had been elevated to 135 and he became tachycardic. After they gave him some vasopressors, his heart rate returned to a more normal 68.

John said that Dad had had a good night, but when I asked him about the restraints, he said that Dad had tried again to decannulate himself, so the restraints had to remain.

When the new attending physician, Dr. Veronica Brito, stopped by for a pre-round check, we asked her about the restraints and the possibility of getting Dad into the Stryker chair. We had never met this doctor, but she told us that she was on the regular rotation with the CCH. Because of vacations and some shift changes, we had missed seeing her during Dad’s earlier stay at the CCH. She told us that the nurses didn’t think that Dad was strong enough to get in the chair. I was annoyed and she and I had an intense discussion about exercise, restraints, and dialysis. I told her that we wanted a plan to get him off of the restraints and that it was one of the issues that was keeping him here. She said that he had other problems that were keeping him here–like his dialysis. I told her that the dialysis wasn’t keeping him here and that primary thing keeping him from West was the restraints. She said that he was still very sick and that we had to respect his health. I told her that at Memorial, it seemed very important for him to get in the chair every day, even if three nurses had to drag him to it. I told her that I couldn’t understand why getting out of bed didn’t seem important at the CCH.

At 10:30 A.M., I was surprised when John and Hector, an aide, moved Dad from the bed to the Stryker chair. John said that he didn’t think that Dad should go outside where he couldn’t be monitored by the nurses. Mom and I wanted to see how Dad fared in the chair this morning, and if Dad’s vitals remained within a good range, maybe we could take him outside this afternoon. Shortly before we left for lunch, a nurse stopped by and finally removed Dad’s nasal feeding tube.

When Mom and I returned after lunch, Dad was in the Stryker chair and John and Hector prepared him for our cardiac chair road trip. His invasive devices had to be unhooked from the wall and attached to mobile-equivalent devices. Mom manned the oxygen tank and I drove the chair. We weren’t permitted to go outside, but we explored every hallway in the building. We chatted a lot, although I couldn’t understand most of what he said. He said that he was glad that I was there because he said that I was his tiger, compared to Mom, who he said was more like a kitten. Statements like that proved how little he knew about Mom’s role and daily battles on his behalf. If we could ever get him out of this place, I’d have to address some of his misperceptions.

Mom and I left the CCH at 4:45 P.M. and Stan arrived at the house shortly after we returned to the house. This was another one of his short trips in which he would take care of the yard, sit with Dad while we were at church, and then return home. We told Stan about the day and the new attending physician. Although we had had an intense discussion with her, she seemed to listen to us. All in all, it had been a pretty good day.