dialysis – Page 2 – Tale of Two Parents

More milestones on the road to recovery

Published on February 6, 2018February 5, 2018 by mellowdee551 Comment

February 15, 2016. Around 1:00 A.M., the sound of the Yankauer pump woke me, and then I heard Mom and Dad talking, so I got out of bed and went downstairs to their room to see if they needed any assistance. The tube feed bag wasn’t empty, but it was off, which initially annoyed me. Then I noticed that Dad’s congestion sounded bad, so I told him that I wanted him to have another breathing treatment. While I was getting the nebulizer ready, Dad complained about the Kangaroo feeding pump and how it was preventing Mom from getting her much-needed sleep, which also annoyed me. He resisted drinking the Nepro during the day and now he was coming up with reasons to not consume it at night. They had insisted that they could take care of themselves, but Dad seemed to be coming up with excuses to ignore the doctor’s instructions. After Dad finished the four-minute breathing treatment, I restarted the Kangaroo pump and returned to my bedroom.

When I got up at 6:00 A.M., I found Mom struggling with the tubing that connected the G-tube to the tube feed. Dad needed to get out of bed to use the bathroom, and Mom was having a difficult time getting him unhooked. Dad waited patiently as I helped Mom to set him free.

While Dad was brushing his teeth, he vomited some mucus and Nepro. My first thought was that he might be accumulating fluid in his lungs. I grabbed the oximeter and saw that his oxygen saturation was down to 96%. In the past, there were times when I would have been thankful for 96% oxygen saturation, but not since he had been red capped. From the time that he was red-capped and then decannulated, his oxygen numbers had hovered between 99-100%.

I gave him another breathing treatment at 7:20 A.M., but it didn’t seem to help him much. We had a doctor’s appointment today with Dr. Sarla Patil, Dad’s PCP. She had wanted a consult appointment with us to catch up on everything that had happened to him since May 6, 2015. After waiting 45 minutes to see her at his appointment on February 4, Dad cut that visit short because he was eager to get his first haircut after coming home.

We left home for Dr. Patil’s office at 10:15 A.M. The drive to her office might have taken us 15 minutes, and we finally saw the good doctor 11:15 A.M. She’s not part of the Scott & White network, but she had been given access to Dad’s medical records and had reviewed them prior to our visit. She spent an hour with us, going over all of the details of his ordeal. She, like many others, was amazed that he had survived. I wished that Dad could have appreciated how lucky he was and how fragile his condition was. He just seemed to take it all for granted.

We had taken two cars to the doctor’s office. On my way home, I stopped by the pharmacy to pick up a refilled prescription and some Tussin for Dad’s congestion. Sue, our friend and nephrology nurse practitioner, had advised me to buy only Tussin. It has only one active ingredient (guaifenesin), and would not adversely interact with his other medications.

When Dad, Mom, and Michell returned home, we all ate lunch. Dad agreed to drink some Nepro at lunch with his ham sandwich. Dad had time for a short nap before his swallow therapy session with Kristen. During this session, she had Dad eat some potato chips and two types of cookies. From what I could tell, he handled them pretty well. Bit by bit (or bite by bite), he was being cleared to eat a normal diet.

Shortly after Kristen left at 3:00 P.M., Dad took another short nap, waking up at 4:00 P.M. During happy hour, he drank some ginger ale. For dinner, Mom prepared one of Dad’s favorite meals—salmon and green beans, followed by pineapple sherbet.

After dinner, we played a spirited game of Oh Hell, and Michell won. By 8:00 P.M., the four of us were heading towards my parents’ bedroom. I set up the nebulizer and administered another breathing treatment. When Mom administered Dad’s meds, I had her also add some Tussin in Dad’s G-tube. Michell assisted Mom in setting up the Kangaroo pump. The tubing had to be threaded in a specific path through the pump, and the daily setup process still confounded Mom. By 8:30 P.M., Dad was drifting off to sleep, and Michell and I were heading to our respective rooms.

February 16. Dad was still congested today, but regardless of how he felt, today was a dialysis day, which meant that he, Mom, and Michell were up at 4:00 A.M. Dad was dressed by 4:30 A.M., and I stopped work for a few minutes to give him a breathing treatment. Once again, the HOP bus arrived at 5:45 A.M., 15 minutes early. Dad had gained more than five pounds over the weekend and had 2,600 ml of fluid removed during dialysis. He and Michell arrived home at 11:45 A.M., and I was able to take a break from work at 12:30 P.M. to join them for lunch. I was able to get Dad to drink a glass of Nepro with his ham and cheese sandwich. He needed to consume three cans of Nepro per day, so any amount that I could get him to consume during the day was that much less that he needed to consume at night.

About an hour after lunch, Dad was ready for a nap. With some oversight from Michell, Mom administered Dad’s midday meds. After resting for less than 30 minutes, Dad woke from his nap at 2:15 P.M., but wanted to lie down again at 4:00 P.M. Less than an hour later, he was up and ready for happy hour. In keeping with his drinks of thickened liquids, he enjoyed a nectar drink.

Mom made a pizza for dinner, and Dad downed two slices and chased them with some sherbet. We started playing cards at 7:25 P.M., and by 8:15 P.M., Mom had won our nightly game of Oh Hell. After Mom finished administering Dad’s meds and prepared the Kangaroo pump and tube feed, Michell and I left for our respective bedrooms.

February 17. Today was a milestone day. Michell would be leaving us, and Dad would attend his plan of care meeting at the dialysis center. I started work at 3:45 A.M. and about an hour later, I heard Dad calling me. He wanted to get up. I had turned off his tube feed at 3:00 A.M. when the alarm on the Kangaroo pump indicated that the tube feed bag was empty. He had consumed this three cans of Nepro during the past 24 hours, so I turned off the pump and disconnected him from it.

I spotted him as he transferred from the bed to the wheelchair. He quickly wheeled himself to the kitchen and read the newspaper while he waited for Mom to get up. After he ate breakfast, I took a short break to apply shower shields to his dialysis port so that Michell could help him shower. When he was finished showering and shaving, Mom administered his morning meds.

I had a morning of meetings to attend, but I stopped for a few minutes at 9:45 A.M. to chat with Brenda when she arrived for Dad’s physical therapy session. She would have one more session with Dad before Kathleen, her supervisor, assessed Dad’s progress. Her assessment would determine whether Dad could receive additional physical therapy, and if he could, she would set his goals.

At 10:30 A.M. we said teary goodbyes as Michell left us for the last time. She had joined One on One Personal Homecare after Dad returned home, and Dad had been her first patient with the company. She had been invested in his care and very protective of him. When she left, I gave her a card from Stan and me that contained a $300 gift card. Fortunately, she did not open the envelope until she was gone because I don’t think that my parents would have been thrilled that I gave her the extra money. On her way home, she stopped by a fast-food restaurant and opened the card and called me and tearfully thanked me. The house seemed unusually quiet after she left. I don’t think that my parents and I had been alone in the house since last May. Once again, I felt like I had lost another safety net. I didn’t know if Mom yet realized how much support we received from the aides, but within a few minutes after Michell left, Mom called me when Dad started vomiting a lot of mucus.

I worked a little longer, and then we ate lunch. During lunch, Mom and I tried to convince Dad to drink his three cans of Nepro during the day. If he would do that, we could discontinue the tube feed. The idea received only a lukewarm reception from him. He was all in favor of discontinuing the Nepro during the night, but he didn’t want to drink the three 8-oz cans of it during the day.

After lunch, we headed to the dialysis center for Dad’s second plan of care meeting. In October, I had attended the first meeting by myself, so this would be the first meeting for Mom and Dad. After he walked down a very long hallway with his walker, the group of caregivers all but gave him a standing ovation. The dietitians, nurses, case workers, and doctor in attendance were very impressed with his current condition and that he had made the long walk. Everyone also validated the things that we had been doing to care for Dad, which relieved me. We had a great session. Last month, Dad had resisted the idea of surgery to remove his dialysis port. During this meeting, I think that we convinced him to have the fistula surgery, and he agreed that the graft would be his best option. In addition to reduced risk of infection, the fistula would enable him to shower without shower shields. Most dialysis patients have fistula surgery for dialysis, which enables the dialysis center personnel to use his arm for dialysis. The dialysis ports that Dad had were considered temporary. Dr. Issac said that he would give us a referral for the surgeon who performs the surgery. Because Dad had been so weak, Dr. Issac had not wanted Dad to have the surgery before now. However, he now felt that Dad was almost strong enough to withstand more surgery.

Instead of playing cards after dinner, we spent quite a bit of time going over meds, how to dispense them, and how to set up the tube feed and Kangaroo pump. While we were at it, I also figured out how to turn off that damn alarm on the Kangaroo pump. The pitch of the alarm was too high for Dad to hear, but Mom and I heard it loud and clear. Now she and I would sleep better. Before I went up to my room, I showed Dad how to disconnect his G-tube from the Kangaroo pump tubing. I had hoped that showing Dad how to free himself from the pump wasn’t a mistake. I crossed my fingers that he would not try to get up and out of bed without assistance. He had been terrible about not wanting to bother the aides. I feared that he would not want to bother Mom.

Getting better doesn’t feel like progress

Intentional decannulation!

Published on January 23, 2018January 20, 2018 by mellowdee55Leave a comment

February 8, 2016. When I woke up this morning, I thought I heard Dad and Mom talking, but when I went downstairs to check on them, she was sleeping, and he was rolling over in bed. I donned my scrubs and headed to my parents’ office to work. Shortly after 4:30 A.M., I heard Dad calling out my name. When I entered the master bedroom, he told me that he was ready to get up. He had not yet consumed three cans of Nepro overnight. I persuaded him to try to sleep for a bit longer. In the end, he stayed in bed until 6:15 A.M. Dianne came in and unhooked Dad from the now-empty tube feed and helped him into the wheelchair. Dad shaved, got dressed, and headed into the kitchen to prepare his hot water while Mom got dressed. While Dad read the paper, Mom prepared pancakes for their breakfast.

At 7:40 A.M., Dad said that he wanted to lie down. When he returned to the bedroom, I prepared his meds and watched as Mom administered them. While Dad took a short nap, Dianne called Becky to see if Michell would be returning tomorrow. Michell’s mother had undergone gallbladder surgery last week, and I didn’t know if her mother’s recuperation would affect her ability to return. I had tried to text her, but it seemed that her phone number was no longer valid. Becky told Dianne that Michell had a new phone number and planned to return two days from now on Wednesday.

Brenda stopped by at 9:20 A.M. for Dad’s physical therapy session and gave him a good workout. When I told her that our skilled nursing services had ended and that we were ending our aide service in less than two weeks, she was very concerned. The aides had been a godsend. I could not have kept working, and I’m not sure that Dad would have survived without their assistance. However, although Dad had not fully recovered, my parents felt that they had reached a point where they could get by without them. My mother was weary of having the extra people in the house, and they cost more than $1,000/week, and to date, they had been with us for 16 weeks. Before she left, I told Brenda that I would contact Adan to talk with him about our remaining therapy home care. She said that she would tell Adan to expect a call from me. When Brenda left, I sent a text message to Adan, asking him to call me.

Shortly after Brenda left, Mom, Dad, and I drove to the automotive repair shop to retrieve Dad’s SUV. We had left it there on Friday, and it was now ready. We returned shortly before noon. After lunch, Dad wanted to take a nap before his 2:00 P.M. swallow therapy session with Kristen.

Like many of his sessions with Kristen, she spent quite a bit of time reminding Dad about what he could eat. We also spent some time talking about sodium.

At 3:25 P.M., the four of us piled into Dad’s SUV and drove to the pulmonary clinic. I had been crossing my fingers and toes for days that this appointment would turn out well. After taking Dad’s vitals, the office staff ushered us into the exam room at 4:00 P.M. Dr. Giri and Svenja (the trach goddess of Scott & White) were pleased that the diameter of Dad’s stoma had decreased and agreed that it was time to decannulate Dad. I could barely contain my excitement. Within moments, Svenja removed the trach and showed me how to clean and dress the stoma. Before we left, she also gave me some supplies to dress the stoma until it closed. During Dad’s hospitalization and recovery, medical professionals reminded me that it takes longer for an elderly person to heal. I hoped that Svenja provided me with adequate free supplies. As we were leaving the pulmonary department, I said what I hoped would be my final goodbyes to some of the pulmonary staff that I had come to know during the past year—including Dr. Stewart, who had told us that Dad would probably never be able to eat carrots and peas. Score!

We arrived home at 5:00 P.M., just in time for a very happy happy hour. We watched the news, and an hour later Mom served us Swedish meatballs for dinner. By 7:45 P.M., we had finished playing cards and Dianne beat me at Oh Hell by one point.

After Dianne helped Dad get ready for bed, I walked Mom through the process of getting Dad hooked up to the Kangaroo pump and administering his nighttime meds. Fortunately, trach care was now a thing of the past. I would change his stoma dressing in the morning.

When I called Stan to tell him about the events of the day, he told me that Dianne had told him on Sunday that she had not ever worked for a client that had gotten better. Wow.

February 9. I woke up a little before 3:45 A.M. and woke Mom and Dad at 4:00 A.M. Mom had added the third can of Nepro only a couple of hours earlier, and about a cup remained, which meant that Dad would have to finish the remaining Nepro when he returned from dialysis. After getting dressed, he wheeled himself to the kitchen and prepared his hot water while Mom prepared his Cream of Wheat and figs. While Dad was eating, I worked with Mom to prepare Dad’s bag for dialysis and to administer his morning meds.

While Dad was in dialysis, our neighbor, Barbara, stopped by with some beautiful roses. She stayed for about an hour and got an earful from Mom and me about some bothersome things that happened to Dad during his stay in the Scott & White hospitals.

During dialysis, 1800 ml of fluid was removed, and Dad’s weight changed from 68.4 kg to 66.8 kg. After he returned home, we ate lunch and then Dad took a nap. While he slept, we connected him to the Kangaroo pump. During the two hours that he slept, he consumed the remainder of the Nepro.

After he got up, I knew that I had to change his stoma dressing. I was a little squeamish about this chore. I had this visual image of seeing the inside of his trachea. When I removed the old dressing, I was surprised at how much the stoma had closed. Although the skin on his neck had not closed, the trachea was practically healed. Svenja had told me that for a few days, when the dressing was removed, Dad would not be able to talk without covering the stoma. For all intents and purposes, the trachea had closed in 24 hours. I had no idea that the body could heal itself so fast. I’ve had paper cuts that took longer to heal.

During happy hour, we watched the news and were anxious to hear the results of the New Hampshire primary election. Mom beat the pants off everyone in Oh Hell, and by 7:45 P.M. I was helping Mom get Dad ready for bed. I don’t think that she realized how much work it was to care for Dad. Before heading up to my room, I checked my phone and learned that Trump and Sanders had placed first in the New Hampshire elections. Go figure.

After falling asleep, I was awakened by a text message. It seemed that the father of a Glassell classmate had died earlier in the evening. I had only seen photographs of David’s father, but after having worked so hard to keep my father alive, this death hit me hard.

February 10. Everyone was still sleeping when I started working, but at 5:00 A.M., I heard Dad insisting to Mom that he wanted to get up. We had moved one of the baby-monitor stations to the aide’s bedroom, so Dianne appeared a couple of minutes later to help Dad get up. Mom had already disconnected him from the Kangaroo pump. Because he got up early, at least one cup of Nepro remained in the tube-feed bag, and he would need to finish it later in the day.

Brenda arrived at 9:00 A.M. for Dad’s physical therapy session. Dad’s goal for this period was to be able to walk with a cane, and Brenda was doing her part to ensure that Dad’s balance would support that goal.

Minutes after Brenda left, Michell arrived. We said our final good-byes to Dianne. This last week with Michell would be our final week of aides. Stan had purchased some angel pins, and I gave one to Dianne as she left. Dianne’s loud non-stop talking sometimes grated on Mom’s nerves, but she was a good aide, and I had appreciated the way in which she cared for and watched out for Dad.

After lunch, Dad started giving me static about eating, saying he would not consume more food as long as he was receiving three cans of Nepro. I told him that I would not reduce the amount of Nepro by a can until he ate more. I had been monitoring his caloric intake since he started eating meals with us and he had never consumed more than 675 calories each day, which was not enough for him to maintain his weight, let alone gain weight and keep up his strength. We had both dug in our heels and I eventually left the room.

When he got on his bed for a nap after lunch, he pitched a fit when Michell hooked up the pump to his G-tube so that he could consume the remainder of the Nepro. He was starting to get on my last nerve with his constant refusals to exercise or eat. I took a break and went outside for a long walk. As I returned from my walk, I met Kristen in the driveway. It was 2:00 P.M. and time for Dad’s swallow therapy session.

When Mom and Michell got Dad up from his nap, he was still in a snitty mood and was a little rude to Kristen. Kristen had been in the house only a few minutes when we heard a knock at the door. Mom and I were thrilled to see Adan on our doorstep. Dad didn’t remember him, but Mom and I were very grateful to him for his support and all that he had done to enable us to get Dad eating again. Unfortunately, Dad’s icy demeanor didn’t thaw when he met Adan, and I was embarrassed beyond words. Kristen had told Adan about Dad’s great progress and had conspired with Adan to surprise us. While Adan was here, he mentioned that he had spoken with Dr. Randall Smith about Dad’s progress. Dr. Smith had saved Dad’s life by switching Dad’s discharge orders from hospice to home care and would always hold a special place in my heart.

Shortly after Kristin and Adan left, the doorbell rang again. Gale had arrived! We had arranged to have a dinner for both Michell and Gale. Although Gale hadn’t been our aide since Thanksgiving, she had been the perfect aide for Dad during his first week at home. She had implemented some of our home care standards and had taught me a lot. I don’t know how we would have coped without her.

Now that Gale was in the house, Dad was in a much better mood. The five of us enjoyed a nice happy hour, followed by a scrumptious meal. I had forgotten how much Gale liked playing Oh Hell, and she hollered with delight when she won. By 8:00 P.M., she had to leave to drive a couple of hours to her home. As she left, I hugged her goodbye and gave her an angel pin in the hope that she would remember us and how grateful we were for having known her.

Tomorrow was a dialysis day, so as soon as Gale left, Dad started getting ready for bed. Mom and I set up the Kangaroo pump and administered his nighttime meds.

The first part of the day was a little rocky, but I loved seeing Adan and Gale today. It felt like a day of transition, but the real transition was still a week away, when we would no longer have any aides.

Baby steps toward normalcy

Published on January 16, 2018January 16, 2018 by mellowdee551 Comment

February 4, 2016. At 2:00 A.M., Dad was awake and was making noises that Dianne couldn’t understand. It took her only a couple of moments to realize that his red cap was missing, which prevented him from being able to talk. Dianne spent a couple of minutes looking for it and found it on the floor. He must have blown it off when he coughed during the night. We had a spare red cap in a saline container, which Dianne placed on Dad’s trach. She then placed the soiled red cap in the saline and refilled the tube-feed bag with Nepro, and then she and Dad went back to sleep for a couple of hours.

When Dad woke up at 4:00 A.M., the tube-feed bag was not empty, but Dad could not remain in bed on a dialysis day. By 5:45 A.M., Dad and Dianne were on the HOP bus and on their way to dialysis. While he was there, 1500 ml of fluid was removed. When Dad left this morning, his ankles seemed a tad swollen, so I hoped 1500 ml of fluid was adequate.

Dad and Dianne were back home by 11:30 A.M. I had been in meetings all morning and hadn’t seen them leave or return. I was able to break from working at noon, and the four of us had lunch together. To accommodate an appointment with his primary care physician (PCP) and a haircut this afternoon, Dad wanted to take his nap right after lunch.

The four of us arrived at his PCP’s clinic at 2:45 P.M., and then sat for 15 minutes in the waiting room and an additional 30 minutes in the examination room before Dr. Sarla Patil arrived. Dr. Patil had become Dad’s PCP a few months before he entered the hospital, and Dad had seen her a couple of times before his surgery in May 2015. During Dad’s hospitalization, she had not received as much as an email from the physicians at Scott & White, which seemed like a strange way of maintaining doctor/patient relationships. We had made this appointment to have Dad’s staples removed from his head wound, but Dr. Patil wanted to talk about the events of the past nine months. However, Dad was determined to get a haircut today, and he cut the conversation very short. On the way out, we made an appointment to see her for a consultation, which would enable us to have a longer conversation.

We had arrived in separate cars, so when we left, I drove to HEB to pick up some groceries and then went home so that I could go back to work. Mom, Dianne, and the newly-trimmed Dad returned home about 30 minutes after me, and they were ready for happy hour.

We had planned to tell Dianne that this would be her last shift with us, but after dinner and our game of cards (in which Dad beat me by 1 point), she dropped Dad’s hearing aids behind his dresser. The dresser was tall and heavy as lead, so retrieving them would be challenging and I didn’t plan to attempt to retrieve them until tomorrow. When Dianne was out of the room, Dad told me that he was concerned that she might think that the mishap with the hearing aids had something to do with the end of her service and asked me to wait and tell her tomorrow.

By 8:00 P.M., Dad was in bed and falling asleep.

February 5. I had a busy day at work, which started just before 4:00 A.M. Mom stopped by to see me just before 6:00 A.M. to say hello and to refill my coffee. I asked her how Dad was today and was surprised to learn that he and Dianne were still sleeping. About 30 minutes later, I heard them talking, and then at 7:45 A.M. I heard the sound of Dad’s wheelchair passing by the office en route to the kitchen. After having a cup of hot water, which he referred to as weak coffee, he ate his usual Cream of Wheat and figs with peaches on the side. After so many months without eating, Dad’s taste for coffee had not yet returned. I tried to get him to try drinking it with cream, but he would drink only black coffee or water.

At 9:00 A.M., Dad told Dianne that he didn’t feel well, and wheeled himself back to the bedroom and napped until 10:00 A.M., waking once to use the suction wand. After waking, with some assistance from Dianne, Dad got into Mom’s Chrysler LeBaron so that he could identify a sound that she had been hearing. I can only imagine how difficult it was for him to get out of that car. Like many sports cars, the LeBaron is low to the ground, which makes exiting it difficult.

Mom, Dad, and Dianne ate lunch at 12:30 P.M., but I was unable to break away from work to join them. I was able to stop work for a few minutes at 1:30 P.M. when Janet stopped by for Dad’s occupational therapy session. As soon as Janet left, I followed Mom and Dad in Dad’s car to a repair shop, where they left it. When we returned home, Mom and I used a collection of patches to cover Dad’s dialysis ports so that he could take a shower without exposing his dialysis catheter to moisture. We taped him up so well that I was concerned that the patches wouldn’t come off without pulling on the catheter. I’d be glad when he could have the catheter removed. The catheter provided an infection entrance ramp to his heart. When he was finished with his shower, Dianne replaced Dad’s g-tube stoma dressing and trimmed his toenails.

While Dad got a pedicure and then took a nap, I worked, but he and I joined Mom and Dianne at 5:00 P.M. for happy hour. After an early dinner, we played Oh Hell, and Mom won. By 7:30 P.M., Dad was in bed and was waiting for Mom and me to administer his nighttime meds and set up the tube feed with two cans of Nepro. When Dad returned from the hospital this past September, I had insulated Mom from all of the caregiving activities. When my parents decided that they could get by without the aides, my mother had agreed to assume some of the caregiving activities. She now seemed to be a bit overwhelmed by the level of care that Dad still required.

February 6. At 2:30 A.M., the alarm on the Kangaroo pump woke Dianne, but the high-pitched alarm didn’t phase Dad, and he continued to sleep soundly. Although I was grateful for my dog-like hearing, there were times when I wished that I could sleep through these alarms. Dianne added the third can of Nepro to the tube-feed bag and returned to bed to sleep for 90 minutes.

I had to drive south to Houston today and then to north Conroe to celebrate a friend’s 60^th birthday. I had forgotten to set my alarm but was awakened by the sound of Dad and Dianne talking. Dad got dressed and wheeled himself to the kitchen for his Cream of Wheat breakfast. By 6:00 A.M., Dianne and Dad were on the HOP bus. When they pulled out of the driveway, I ate breakfast and then left for Houston.

A couple of hours later, I stopped at the Buc-ee’s near Waller and met Stan, who was en route to Temple. I arrived at my home in Houston at 10:00 A.M. I dropped off some clothes, gathered some others, and changed for the party in Conroe. The seasons were changing, and periodically I needed to swap out portions of my wardrobe.

Back in Temple, Dad had required the removal of only 1200 ml of fluid during dialysis, which is a minimal amount. Not only did Dad finish early but he and Dianne were also able to board a HOP bus as soon as they exited the clinic, enabling them to return home at 11:02 A.M.—an all-time record. On most dialysis days, Dad returned home just in time for lunch. Because they were home so early today, they decided to sit in the sunroom to rest and visit. Dad had barely sat down when Stan arrived. After visiting for a few minutes, Mom prepared them grilled cheese sandwiches for lunch.

Dad needed a nap, but because Stan was here, he was adamant that he wanted to wake up by 2:30 P.M. Shortly after he woke up, he and Stan drove to Lowe’s. Using his walker, Dad walked from the parking lot to the front door of the store where he was greeted by Lowe’s employees who showed him to a motorized wheelchair. I would have thought that Dad would have objected to using it, but he took to it like a duck to water. They guys purchased their supplies, and then Dad used his walker to return to the car.

I had enjoyed seeing some of my dearest friends at the party in Conroe, but I had to leave the party at 3:15 P.M. and drive to Temple. I arrived at my parents’ home just in time for dinner. Mom fixed a nice dinner of roast beef and mashed potatoes, and we enjoyed King Cake for dessert.

After dinner, the five of us played Oh Hell, and I won by one point! At 8:00 P.M., Dad wheeled himself to the bedroom to start his nighttime routine. As Mom finished her new nighttime duties, Dad was drifting off to sleep at 9:00 P.M.

February 7. Dad had another great night’s sleep. Dianne woke up shortly before 3:00 A.M. to add a can of Nepro to the tube feed bag. Dad woke up at 6:00 A.M. and wanted to get up, but Dianne told him that he had to stay in bed until the Nepro was gone. She told him to sleep for another 30 minutes. When Dad woke up again at 6:40 A.M., the Nepro was gone, and he was eager to get up. Dianne unplugged him from the pump and helped him out of bed. He then got dressed and wheeled himself to the kitchen for his daily cup of hot water.

The five of us ate breakfast together. For the past 58 years, Mom has baked a special bread for Christmas. Because he could not swallow at Christmastime, Dad could not participate in our traditional breakfast. Believing that Dad would be able to eat again someday, Mom had frozen a loaf of the bread that she had baked this past Christmas, and today we toasted it for breakfast. To mimic our traditional breakfast, she served it with eggs and bacon, making the meal seem like a second Christmas breakfast.

While Mom and I were getting ready for church, Stan and Dad played a couple of games of cribbage. While we were gone, Dad and Stan went outside for a walk around the backyard. It was cool and windy, so they didn’t stay outside for more than a few minutes.

When Mom and I returned from church, the five of us ate lunch. After lunch, Stan and I moved the twin bed that Mom had been using into a guest room, swapping it for the inflatable bed that had been there. Starting tonight, Dianne would sleep in the guest room and Mom would sleep in the master bedroom. I feared that, like the aides, Mom would not enjoy too many restful nights, but we had to start transitioning to our new normal.

Shortly after Stan and I rearranged furniture, he had to return to Houston. Shortly after he left, Mom, Dad, and I drove to Bob Mills, a local furniture store, to look at beds. Mom had donated their king-size bed to charity a couple of days before Dad was discharged from the hospital. Now that the aide service would be ending soon, we planned to return the hospital bed to American HomePatient, and my parents needed a new bed. Because Dad was not supposed to lie down flat on the bed, my parents wanted a split king-size bed so that he could elevate his head. We looked at few beds and made notes of prices for more comparative shopping.

We returned home shortly before happy hour, and after dinner, we watched the Super Bowl game while playing Oh Hell. At 7:30 P.M., Mom started working with Dad on his bedtime routine. She was a bit nervous, so I was glad that we started now while the aides were still here. I couldn’t blame her for being nervous; I was a nervous wreck for the first two weeks that Dad was home. Heck, I was still nervous. I was ready for bed at 8:30 P.M., but Mom and Dianne returned to the sunroom to watch the game, but neither of them could stay awake until the end. My parents are fans of the Broncos, who were winning when Mom and Dianne turned off the television.

The second fall, and this time without a safety net!

Published on January 2, 2018March 10, 2018 by mellowdee551 Comment

January 26, 2016. Because it was Tuesday and a dialysis day, everyone in the house was awake and up by 4:00 A.M. Dad and Dianne zipped through their morning routine, and they were ready and waiting for the HOP bus when it arrived at 5:45 A.M. Dad’s dialysis session started at 6:00 A.M. and was finished by 10:15 A.M. When he checked in, he weighed 66.6 kg, and when he left, his weight was down to 65.4 kg, so they removed only a minimal amount of fluid.

Unfortunately, finishing dialysis early doesn’t necessarily mean that you can leave early. Dianne and Dad had a bit of a wait for a bus that would take them back home. When they arrived home at 11:30 A.M., Dad wasn’t feeling very well and wanted to take a nap. We had a quick lunch so that he could start his nap at 12:15 P.M.

At 1:20 P.M., he started to get out of bed because he needed to vomit. We quickly unhooked him from the tube feed so that we could help him get out of the bed. He vomited a couple of times, but only mucus. He still wasn’t feeling too perky and wanted to lie down for a few more minutes. Because of his nausea, we did not restart the tube feed.

We had been anticipating the arrival of a nurse to reevaluate Dad for another 60 days of skilled nursing. A nurse that we had not met before arrived at 2:00 P.M. for the recertification visit. Instead of being approved for the additional time, she said that Dad was too healthy and that she would not recommend further skilled nursing support. Instead, we would be permitted three calls to the Home Care office during the next 60 days. I suddenly felt like I was dancing on a tightrope and my safety net had just been removed.

After the nurse left, Dad got up for a few minutes to have some shaved ice, but soon wanted to lie down again. He got back up again a few minutes before 5:00 P.M. to join us in the sunroom for happy hour. After chatting for a few minutes, he wheeled himself to the hall closet. Moments later, we heard a loud crash, and Dad was on the floor and on his back. We all ran to him to see what had happened. Apparently, while standing in front of the unlocked wheelchair, he got his feet tangled up in the small front wheels and lost his footing. Fortunately, his fall to the floor was somewhat akin to a bouncing pinball, so he didn’t fall straight to the floor. He did land on his head, however, and it was bleeding. After helping him back into his wheelchair, we gave him a cold compress for the goose egg that was quickly developing on the back of his head. The bleeding seemed to stop, and he wanted to return to the sunroom to watch the news.

When the news was over, Mom noticed that the bleeding had restarted. After careful examination, it seemed that additional swelling had caused little cuts to open and bleed. I used one of my three lifeline calls to Leo, the after-hours nurse. He encouraged us to take Dad to the emergency room to ensure that he was OK. I had often said that I would never take Dad back to the Scott & White emergency room unless he was bleeding profusely, so I guess that this situation qualified as ER-worthy.

Mom, Dad, and I left home for the emergency room at 6:30 P.M. After three hours, a CT scan, four staples in his head, and a tetanus shot, we were on the way back home. The arrival home was pretty exciting when he practically fell on the garage floor as he transferred out of the car.

Dianne ate dinner while we were gone, but when we got home at 10:00 P.M., we ate beans and franks and pumpkin cookies. Dad’s dinner didn’t stay with him very long. Within a few minutes, he had vomited his dinner and cookies. I wished that someone could shed some light as to why Dad kept being nauseated.

We finally got him to bed at 10:30 P.M. We decided to restart the tube feed but restricted the flow to 25 ml/hour. Shortly before 11:00 P.M., the lights were out downstairs, and I was heading to bed.

January 27. Dad had a restless night’s sleep, but he and Dianne slept in until almost 7:00 A.M. I didn’t have any early morning meetings and was able to sleep in until 4:45 A.M. It wasn’t close to a full night’s sleep, but after our late night at the ER, it was better than getting up at my usual 3:30 A.M.

When Brenda stopped in for Dad’s physical therapy session, she was relieved to learn that Dad’s fall wasn’t caused by balance issues and that it was no worse than it was. Dad said that he felt fine and didn’t have any pain, so she concentrated on exercises that would improve his balance.

Shortly after Michell arrived at 10:30 A.M., I emailed Becky, the owner of One On One Personal Home Care Services, and informed her that we would be ending our services with her company on February 17. I also asked her to let us tell Michell. We had become fond of her and we wanted her to hear the news from us.

While Dad was in the hospital, the lock on our front door had quit working. With a little assistance from Michell, Dad switched the front-door lock with one that was never used. After six months of not having access to the house from the front door when it was locked, it was nice to have it working again.

When Kristen arrived today for Dad’s swallow therapy session, we had a tea party of pumpkin cookies and tea. She wanted to see how Dad handled thin liquids and food. He did pretty well, and Kristen presented us with a lesson in anatomy. I still marvel at how any of us can swallow food without choking.

In response to an email message that I had sent to Dr. Pfanner’s office about Dad’s frequent vomiting, I received a phone call from Julie, Dr. Pfanner’s dietitian. She didn’t provide any insight as to why Dad kept vomiting, but she said that we should increase Dad’s fluid intake. She thought that he should drink at least a liter each day, which was in direct conflict with the guidance from the nephrologist’s dietitian, who said that he needed to restrict his fluid intake. Sometimes I felt like the pushmi-pullyu.

Shortly before happy hour, I changed Dad’s trach. I was a little alarmed at the sight of it. I couldn’t tell if it was coated with mucus and food or mucus and blood. I took a photo of the nasty mess and texted it to Kristen. Kristen responded right away and said that she thought that it looked more like blood than food. I hadn’t stopped to think about how shocking it might have been to receive such a yucky image on her phone. I quickly sent the photo in an email message to Svenja, the trach nurse at Scott & White, but I suspected that I wouldn’t hear back from her today.

We were able to enjoy dinner and a game of cards tonight without any interruptions from vomiting. Dad was on his game tonight and beat us at cards. By 7:30 P.M., we had finished our card game and were starting our nighttime routine.

January 28. Dad and Michell had a good night’s sleep and were up at 4:00 A.M. I had started work earlier than usual today so that I could head back to Houston for a couple of days. Fortunately, Dad and Michell were ready a bit earlier than usual, because the HOP bus pulled in our driveway at 5:30 A.M. to take them to dialysis. I appreciated the fact that they tried to ensure that Dad was not late to dialysis, but 5:30 A.M. seemed a bit early for a 7:00 A.M. appointment.

As I was packing up my computer at 11:45 A.M., Dad and Michell returned home. Because they had returned home when they did, the four of us were able to eat lunch together before I left at 12:30 P.M. These drives to Houston were exhausting, and I usually battled drowsiness about 20 miles from home. Stan had told me that he had often stayed awake by eating M&Ms, so I starting chasing them with coffee somewhere around Brenham, Texas. As soon as I arrived home, I napped for about 30 minutes and then drove to my night class at Glassell School of Art.

While I was driving home to Houston today, Dad took a nap to recover from his dialysis session. After he woke up, he and Michell went to the garage with Mom to check out a problem that she was having with her car.

During happy hour, Dad had a Sprite, which is considered a thickened liquid, but within a few minutes, he was sick to his stomach again. He wanted to lie down and skip dinner. He had planned to watch a presidential debate with Mom, but he wasn’t feeling well enough to get out of bed to join her. Michell helped him to get ready for bed, and he was asleep by 8:00 P.M.

January 29. I had not been to my Houston office in many weeks, but one of the reasons why I had to come home this weekend was so that I could clean out my cubicle to prepare for an office move. After filling up the trash and recycling receptacles in my cube, I started swiping them from all of the surrounding cubicles. When I left for the day, my cube was ready for the move, and my car was full of personal items that would not fit within the new space.

Back in Temple, Dad was having a mixed day. Shortly after he woke up at 5:00 A.M., he started vomiting again. He rested a bit and took his time getting dressed. By 6:30 A.M., he was feeling up to eating his usual breakfast of Cream of Wheat and peaches. Michell had waited until after he ate breakfast to administer his morning meds and trach care. When she was finished with his morning routine, she resumed the tube feed at the slower 50 ml/hour rate.

Shortly before 10:00 A.M., Dad had about ½ cup of yogurt and then told Michell that he wanted to go back to bed. As they were discussing his early nap, they decided to play a game of cribbage instead. Dad had taught Michell how to play a few weeks earlier. She was no substitute for Stan, but I was glad that she was able to distract him from taking another nap.

Janet arrived just before 11:30 A.M. for Dad’s occupational therapy session. Regardless of how bad Dad felt, he always seemed to perk up somewhat during their verbal sparring. I was pretty sure that their banter also distracted him from the exercises.

After Janet left, Dad had a light lunch of ham and cheese and a cup of nectar. Michell was able to get him to practice some of his balance exercises at the sink, and then they walked outside for a few minutes. He then spent the remainder of the afternoon napping.

During happy hour, Dad had some shaved ice. Somehow, Dad had convinced Mom to prepare flounder and beets for him for dinner—a less-than-favorite combination for her. The thought of this missed meal made me want to reach for a Zofran. While Stan and I enjoyed an evening at TUTS watching The Bridges of Madison County, Dad, Michell, and Mom ate ice cream and played Oh Hell, and Mom won.

Getting better doesn’t always feel like progress

Published on December 19, 2017December 19, 2017 by mellowdee551 Comment

January 18, 2016. I drove to my office in Houston and worked until my lunchtime, at which time I left Houston for Temple. While I was in transit, Brenda stopped by for Dad’s physical therapy session. She suggested that they practice a car transfer, but he told her that he was done with practicing the car transfer. He had transferred in and out of the car several times. Brenda didn’t know it, but we had not always adhered to her guidelines, so she probably didn’t realize that Dad had hit the streets for doctors’ appointments and haircuts following his first successful attempt. However, knowing Dad as she did, she wouldn’t have been too surprised. Dad could be very determined, not to mention stubborn. It was a Locke family trait. Instead of car transfers, Brenda had him work on his balance.

When I arrived at my parents’ home in Temple, Kristen, the speech therapist, was reviewing the dos and don’ts about eating and swallowing. While she was there, I showed her some foods that I had purchased in Houston, which included canned nectars and tomato basil soup. Based on some earlier conversations with Kristen, I had guessed that they qualified as thickened liquids, and she agreed.

For dinner, Mom prepared a chicken and biscuit dinner, and for dessert we had angel food cake, topped with a homemade mixed-berry jam. It seemed that we had deviated somewhat from the “avoid meals of white and red” guideline so that we could distinguish blood from aspirated food in his trach, but we didn’t care. We were pleased that we were able to prepare meals that we could all enjoy together. Just a few weeks ago, Dad would retreat to his bedroom while we ate, coming out when it was time to play Oh Hell. We played the card game again tonight, and Dad won.

While Dad was getting ready for bed, I learned that since I had left on Friday, he had started dressing himself.

Before I went to bed, I needed to move my car from the front of the house to the side of the garage. While I was outside, I noticed a large stack of boxes beside the garage. It seemed that UPS had left my order from American HomePatient out of sight of the street and out of our sight too. After using the hand truck to haul everything inside, I unpacked the boxes and saw that they neglected again to send us the saline and 4x4s gauze sponges that I had ordered two orders ago. These supplies were vital for trach care and I had resorted to having the nurses to bring me gauze sponges during their visits.

January 19. Dad had a very good night, waking only once at 3:00 A.M. to use the Yankauer suction wand. When he woke an hour later, he was in a good mood and had a pretty good morning. He and Michell were ready and waiting for the HOP bus when it arrived early at 5:40 A.M.

When they arrived at the dialysis center, Dad weighed in at 66.4 kg. Because his target weight was 63 kg (139 lbs), the dialysis nurse said that they would remove 4800 ml of fluid. Michell had experienced the last time that the dialysis center removed too much fluid. She strongly objected to this news and had the nurse lower the target to 1800 ml. Michell had changed a lot since she first joined us. In November, she had been shocked when I objected to the guidance of the wound specialist. Now, just two months later, she was standing up to the medical professionals. At the end of his dialysis session, Dad weighed 64.8 kg.

After Dad and Michell returned home, I contacted Sue, our friend and the nurse practitioner at the dialysis center, and questioned her about Dad’s target dry weight. Unlike most of their dialysis patients, Dad needed to gain weight. I was trying my best to get Dad to eat more, yet the dialysis center maintained 63 kg target weight for a 6’1” male. Sue agreed that his case was not typical, and increased his dry weight to 64 kg.

While Sue and I were talking, she told me that Dr. Issac, the nephrologist, wanted to talk with Dad about removing the dialysis port and replacing it with either a fistula or graft. She said that she would schedule an appointment for Dad to see Dr. Jaffers, the surgeon. When I told Dad about the call and the possible surgery options, he seemed to become very depressed. It became clear to me that I did a poor job of presenting this information to him in a positive light, and I spent quite a bit of time trying to convince him that he was doing very well and was making great progress. After talking myself blue in the face, I agreed to drop the subject for today. My parents had been determined that Dad would recover to the point that he would not require dialysis. I suspected that surgery to provide a permanent dialysis vessel was a bit disheartening and not what he wanted to hear.

We played Oh Hell after dinner, and Michell won. Dad still seemed a little down, but not as much as earlier. After Dad had gone to bed, Mom thanked me for what I had said to him earlier today, but I don’t think that anything that I said to him had had any effect. She disagreed and thought that he’d feel better tomorrow.

I wondered to myself if it would help if I told him that I believed that he was on day 258 of a 296-day journey, which meant that he was 87% of the way to being better.

January 20. From what I could hear, Dad slept in until 7:00 A.M. I had meetings that started around 4:30 A.M., and couldn’t take a break from work until 10:00 A.M. I took that opportunity to change Dad’s trach, two days past my self-imposed seven-day cadence. The change went well, and Michell noticed that his stoma was becoming smaller. Svenja, the trach nurse, had switched Dad to a smaller sized trach to enable the stoma to begin healing, and it seemed to be working.

At 11:20 A.M., Brenda and the shower tech, Pam, stopped by so that Michell could learn how to apply the shower shield to Dad’s dialysis port and how to help him transfer in and out of the shower. During the process, Dad also got to take a shower. Dad and his shower helpers were finished with Dad’s shower within 30 minutes, and Michell was certified to assist Dad with showers. After Pam left, Brenda spent the remainder of Dad’s physical therapy time working on his walking and balance.

After his lunch of ham and turkey on an English muffin, Dad and Mom worked on some of their finances while I worked. The office seemed just a tad smaller with the three of us in such tight quarters.

At the stroke of 2:00 P.M., Kristen arrived for Dad’s swallow therapy. As she was getting ready to leave, Dianne arrived to relieve Michell. Usually, the aides switched out around 10:00 A.M., but because Michell had had car trouble last week and arrived a few hours late, she had told Dianne that she would stay late today.

Shortly after Dianne arrived, Mom went to the grocery store. When she returned, Mom, Dad, and I got into the car and drove to the church. I was still intent on taking Dad back to church on Valentine’s Day, and I thought that we needed at least one practice run. During the ride there, I shared my plan for his recovery and how I believed that by the time the 296 days were up (148 days of hospitalization and 148 days of home care), he would be ready to be mainstreamed. We all agreed on a plan, but he added that he wanted to end the live-in aides in three weeks. I told him that if he used them to help him exercise, we could terminate our relationship with One On One Personal Home Care. As long as we had the aides, we might as well get out money’s worth from them. He seemed to be onboard. I hoped that this little talk would inspire him to exercise more.

At the church, Dad got out of the car, and we walked part of the way to the door. He became a little winded, but we still had enough time to practice a couple more times before the big day.

For dinner, we ate spaghetti, still one of my favorite comfort foods, and then Dad beat us at Oh Hell.

January 21. Dad woke up at 3:30 A.M. to use the toilet and was ready to get up, but his plans were dashed when Dianne told him that he would stay in bed for another 30 minutes.

Mom was up before 4:00 A.M., and I met her in the kitchen when I made coffee. With the assistance of his walker, Dad went into the closet to select his clothes, and then he dressed himself. After dressing, he wheeled himself into the kitchen and joined Mom for a cup of hot water, which he referred to as weak coffee. Her coffee was somewhat stronger.

When he finished his breakfast of Cream of Wheat and honey, with a peach on the side, I administered his morning meds and trach care. We negotiated the morning routine like a well-oiled machine, and the HOP bus arrived moments after 6:00 A.M.

While Dad and Dianne were at the dialysis center, I called Gale. I subtly implored her to return for one or two rotations. We would be ending our relationship with One on One Personal Homecare Services soon, and I wanted to see her again, if not for work, then for dinner. Gale would not commit to returning to work, but she agreed to come back for dinner. To get the rotation of aides to align with when I wanted to host dinner for Michell and Gale, I might need to get Michell to stay for a two-week stint. I didn’t want to hurt Dianne’s feelings by excluding her from the dinner, but Michell and Gale were by far our favorite aides.

Dad weighed 66.4 kg when he arrived at the dialysis center. After having 2200 ml of fluid removed, he left weighing 64.4 kg. Dianne and Dad returned home at 11:20 A.M.

We had turkey sandwiches and Fig Newtons for lunch, and then Dad took a nap. After the loss of 2200 ml of fluid, he was feeling pretty punk. He said that he’d rather not gain weight if it meant having so much fluid removed. I explained that we’d work with Sue to ensure that they gradually increased his dry weight. She had just adjusted it a couple of days ago, so it seemed a bit premature to ask for another adjustment.

After sleeping for a couple of hours, he started feeling a little better, and by happy hour he was feeling more like his normal self. After dinner, we played cards, and I was tonight’s big winner. We were finished with cards and starting our nighttime routine at 7:50 P.M. Within 30 minutes, he was in bed and sleeping, and he slept well all night.

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.

Finally! A proper toilet and a trip to the barber

Published on November 28, 2017 by mellowdee551 Comment

January 12, 2016. Shortly after 1:00 A.M., Dad’s incessant itching woke him and he told Dianne that he wanted to take a shower, which was not permitted without the assistance of a physical therapy aide. Instead, Dianne applied more anti-itch lotion, which enabled him to fall asleep again. By 4:00 A.M., the Kangaroo alarm had sounded and woke Dianne, who then woke Dad.

By 4:30 A.M., with some assistance from Dianne, Dad had washed his face, brushed his longish hair, and was dressed for the day. Keeping with his normal routine, he wheeled himself to the kitchen and read some of the newspaper while Mom prepared his breakfast of Cream of Wheat with honey and a small bowl of peaches and pears. He was finished with breakfast and ready to go long before the HOP arrived at 6:00 A.M.

His secretions had decreased significantly. The reservoir on the suction machine had measurement markings, and it might sound a little disgusting, but Dad’s secretions now measured less than 1/2 cup per day, which was a fraction of earlier quantities.

Now that Dad could transfer in and out of the SUV, Mom scheduled appointments with the hearing aid center and the dermatologist. She told me that Dad also wanted to see the barber on Thursday. He was usually a little weak on Thursdays because of dialysis, so strength-wise, Wednesday would have been a better day, but his Wednesday dance card was already filled with nurse and therapist appointments.

Dad and Dianne returned home from dialysis shortly before noon. Dianne told me that his check-in weight had been 64 kg and 62.8 kg when he left. After pulling out my calculator and converting kilograms to pounds, it appeared that he had gained a couple of dry-weight pounds. I didn’t want to tell Dad about his weight gain for fear that he’d quit eating so that he wouldn’t get fat.

Mom had prepared grilled cheese sandwiches, a comfort-food favorite, and V-8 Juice for him for lunch, and he ate it without a thought about his weight. He had had 1,500 ml of fluid removed during dialysis, and he was tired. Whenever Dad napped, Dianne took advantage of his downtime and also took a nap, and they both slept for a couple of hours.

During dinner, Dad’s appetite didn’t disappoint. He ate hot dogs, beans, and a couple of crescent rolls for dinner.

After our nightly game of cards, Dianne and I were finished with Dad’s nightly meds and trach care by 8:15 P.M., and by 8:30 P.M., he was sleeping. An hour later, he started coughing, but Dianne was able to get him to suction himself, and he was soon sleeping again.

January 13. When I woke up at 3:30 A.M., I heard Dad tell Dianne that he wanted to go to the little room, which was how he referred to the room that housed the proper toilet in my parents’ master bathroom. During his last visit, Stan had installed grab bars in the little room, enabling Dad to finally use the proper toilet in that bathroom. Dianne responded to Dad’s request by asking why he wanted to go to the living room. He wasn’t wearing his hearing aids, and she couldn’t understand him, so this insane exchange about the little room and living room lasted until I came downstairs and interpreted for them. They both laughed and agreed to refer to this room as the small room. After Dianne helped him back to bed, they both went back to sleep.

Mom had been successful at scheduling an early appointment today with the dermatologist and had to wake Dad and Dianne at 6:00 A.M. This trip to the dermatologist would be his first excursion in the car since May 6, 2015.

While getting dressed, Dad’s dialysis catheter dressing fell off. Unbelievably, Dianne picked it up off of the floor and put it back over his dialysis ports. When I heard what had happened, I had her remove the soiled dressing, and I called the dialysis lab and spoke with Dad’s nurse. The nurse told me that he could stop by the dialysis lab at any time today to have the dressing replaced.

After Mom, Dad, and Dianne returned home from the doctor and the dialysis lab, I told Dad that he needed to eat something. He had been off of the tube feed since 4:00 A.M., and had only eaten 85 calories worth of food. He finally agreed to eat 1/4 cup each of cottage cheese and applesauce. This paltry amount wouldn’t make much difference, but at least he agreed to eat something. When he ate only a portion of each, I told him that he needed to eat more, which prompted an argument. After exchanging a few harsh words, he said: “Melody doesn’t really care if I’m around or not.” Dianne, who had been present during our little exchange, had the good sense to hightail it out of the kitchen before my anger exploded. I grabbed the arms of his wheelchair, and I shook it hard and long while shouting, “How dare you say that to me!” The shouting brought my mother to the kitchen to see what we were arguing about now. I gave her the condensed version and stormed out of the kitchen to the office.

I stayed mad at him all day and was glad that I could stay in the office and work. When Brenda arrived at 10:30 A.M. for Dad’s physical therapy session, she informed us that Pam, the shower aide, would be arriving in a few minutes to help Dad with his shower. This shower session had been scheduled to train Michell how to help Dad with a shower but Michell had had car trouble and had not yet arrived, which annoyed Brenda. This shower session was somewhat less of a fire drill than his first shower, and I think that soap might have been involved this time. After lunch, Janet stopped by for Dad’s occupational therapy session, and Kristen stopped by at 2:00 P.M. for the swallow therapy session.

After dinner, I told Mom that I needed to prepare either tonight or tomorrow for my trip home on Friday. She said that I should make my preparations tonight, which meant that she was canceling tonight’s card game. My parents have a high-efficiency washing machine, and like most of these machines, they’re prone to mold. After using it, I mentioned to her that I had noticed some mold on the seals. In response, she told me that she didn’t like my attitude. I was becoming more eager to leave here with every passing hour.

After Dad got into bed, he started coughing hard and then started vomiting. The vomiting didn’t last very long and he seemed fine. He fell asleep until 10:00 P.M., when his coughing woke me, and I went downstairs to his room. I notice that his red cap was missing. Once again, he had blown off his red cap while coughing. Luckily, I had a few clean ones on hand. I suctioned him again, and I became worried when I noticed the pink color of the secretions in the suction tank. During dinner, Dad had eaten some strawberry ice cream and I feared that he had aspirated some of it. When I tried to take his hand to check his oxygen saturation, he grabbed my hand and held on to it, and I melted. I guess only the ones who you love the most can provoke such opposing emotions in the span of a few hours.

While he had been vomiting, his heart rate had reached 141, but his oxygen saturation stayed about 95% and his temperature remained normal. After his coughing subsided and his vitals were normal, he was ready to go back to sleep, and so was I.

January 14. Dad woke up before 3:30 A.M. and was ready to get up and get the day started, not seeming to have suffered any ill effects from last night. He ate a little breakfast and was ready and waiting for the HOP bus to take him to dialysis.

I had logged on to work around the time that Dad woke up, and my morning was full of scheduled meetings. Michell and Dad arrived home from dialysis around 11:30 A.M. and had already eaten lunch by the time that I was free for lunch.

Although Dad seemed to be in a good mood, he was coughing a lot more today. He was tired from dialysis and wanted to take a little nap, but he insisted that he be awakened by 2:00 P.M.

As instructed, we woke him at the appointed time, and he prepared himself for his second excursion in the family SUV, this time to the barber shop. His barber said that he had wondered what had happened to him. The last time that Dad had seen the barber, Dad told him that he was going to the hospital for some surgery. The barber did a great job on Dad, transforming him into his former well-groomed self.

Shortly after returning home from the barber, Dad said that he wasn’t feeling well and wanted to lie down again. He slept for another hour and Michell woke him just before 5:30 P.M.

Because of his coughing spells today, I decided to resume the saline breathing treatments for at least for a day or two. His secretions seemed to contain some “solids,” which was somewhat disturbing. After the breathing treatment, he started coughing hard again, blowing off the red cap. The way that that red cap flew off of the trach reminded me of a cork flying off of a champagne bottle. After his coughing spell, his oxygen saturation level was 99%, higher than it had been since the day that he was red-capped, so it seemed that his cough had been productive.

January 15. Dad slept most of the night and started coughing around the same time that my alarm sounded. By the time that I got downstairs to his room, he was sleeping again. After working a little over two hours, I heard Michell and Dad talking in the other room, and I stopped for a few minutes to see how he was doing.

As soon as he was up and moving around, he started coughing a lot, and his secretions still looked like they contained solid material. Concerned that he might have aspirated some of last night’s dinner, I texted Kristen. (I don’t know what I would have done without text messaging. It saved so much time so many times and alleviated so much worry.) She replied, saying that some of the solid material in the tank could have come dislodged from pockets in his mouth, and that she didn’t think that he exhibited any of the symptoms of silent aspiration.

Mom and I talked about finding another primary care physician for Dad—one that was part of the Scott & White network. We spent some time online looking for physicians and called the office of our neighbor and doctor, Barbara, to see if she was still taking new patients, but we had to leave a message. We had not received a return call or email by the time that I left for Houston.

Mom and Michell took Dad to the hearing aid center to see the audiologist. She adjusted the volume of Dad’s hearing aids and cleaned them. They returned from their excursion in time for lunch. Dad ate another good meal of a ground roast beef sandwich, tomato juice, and fruit for lunch. Because of its consistency, tomato juice is considered a thick liquid, so Dad was permitted to drink as much of it as he wanted without having to thicken it.

Shortly after I left Temple for Houston, Stephanie, the nurse, arrived. She told Mom and Michell that Dad’s lungs sounded like they were clear, and that he seemed to be doing fine. When she left, Michell coached Dad through his occupational and physical therapy exercises, and then he walked a little on the front porch of the house.

A little after 2:45 P.M., Dad started coughing hard and then started vomiting. Fortunately, I guess, he vomited only tube feed and did not lose his lunch. After a few minutes, he said that he felt better and that he wanted to take a nap.

I arrived home shortly before 4:30 P.M. When I called my mother to tell her that I had arrived, she told me about the events of the afternoon. I spoke briefly with Michell and had her give Dad a Zofran pill for his nausea and cut back on the rate of his tube feed. We had increased the rate from 55 ml/hour to 130 ml/hour. The dietitian at the gastroenterologist’s office had assured me that this rate shouldn’t cause a problem, but all evidence pointed to the contrary. He needed the Nepro to supplement his dietary intake, but he wouldn’t get it if he kept vomiting.

It was good to get home to what seemed like a parallel universe. I don’t know how I would have survived without these periodic respites to Houston and I wondered how so many caregivers—primarily women—did.

Checking off another milestone: successful car transfer

Published on November 21, 2017 by mellowdee55Leave a comment

January 9, 2016. Dad woke up this morning at 4:00 A.M., and from my office, I could hear him coughing. When I changed his trach dressing, I noticed that it was coated with secretions. I was a little concerned that he was having a relapse, but his oxygen saturation was 98%, and his temperature was normal. By 5:45 A.M., he had finished his breakfast of Cream of Wheat and a fig, and was waiting for the HOP bus. By 6:30 A.M., Dad and Dianne were at the dialysis center, and Dad was hooked up to the dialysis machine.

While Dad was on dialysis, Mom and I attended a Methodist Women’s Epiphany luncheon at the church. I had been attending this church for about a year now and knew many of the women. When Mom and I returned home after the luncheon, Dad was finishing a lunch of a turkey sandwich and ¼ cup of applesauce for dessert. He was like a transformer, transforming from someone who proclaimed that he would only nibble, to our eating machine.

Shortly after lunch, Stan arrived from Houston. He and Dad then spent most of the afternoon together, sorting through my parents’ 78 RPM records and playing selected songs. While the guys were sifting through classic tunes, Mom and I were finalizing our notes for tomorrow morning. The pastors at my parents’ church had asked us to address their three services about pastoral care, how it had helped us, and how to request it. I was addressing the 8:30 A.M. traditional service and the 10:50 A.M. contemporary service. Mom would address the 11:00 A.M. traditional service.

Dad and Stan transitioned from sorting through records to watching the NFL wildcard playoff game. Around 4:30 P.M., Dad started feeling “funny.” He hadn’t had his nap, and I thought that he might be feeling the effects of the dialysis. He stayed in bed during happy hour and didn’t want to get up for dinner. I was able to tempt him out of bed after dinner with a slice of pumpkin pie. He joined us for a couple of games of Oh Hell, and he won both games. We were finished playing cards before 8:00 P.M. Following his normal nighttime routine, plus the new chore of applying the anti-itch lotion, he was nodding off by 9:00 P.M., and so was I.

Other than a couple of hours during the late afternoon and early evening, today was a good day for Dad. He coughed very little, and I had started his first bolus feed. Bolus feeding would mimic regular meals. To get started with the bolus feeds, we had tried only one can at the rate of 100 ml/hour. He had balked at the thought of doubling his tube-feed rate, but it amounted to only eight ounces over a 2-1/2 hour period. Unless the couple of hours of discomfort this afternoon were due to the bolus feed, he had suffered no adverse effects from it.

Dad’s itching woke him again at 11:30 P.M., and he asked Dianne to apply more of the anti-itch lotion. The lotion seemed to soothe the itching, and he went back to sleep.

January 10. The lotion relieved the itching for a limited amount of time, and Dad was awake again at 2:00 A.M. He called out for help, which woke me, but not Dianne. When I entered his room, he told me that he needed more lotion. Dianne woke up while I was talking to Dad, and she took over. I left him in her capable hands and went back upstairs to bed.

When I woke up at 6:00 A.M., Dad was still sleeping. He eventually woke up about 30 minutes before I left for church. After attending the 8:30 A.M. church service, I drove back home to pick up Mom, and then the two of us returned to church. Mom attended the traditional service in the sanctuary, and I attended the contemporary service in the Family Life and Worship Center. It was interesting to attend two dramatically different services that had the same sermon.

While Mom and I attended church, the guys collapsed and tore down shipping boxes and played three games of cribbage.

Mom and I arrived back home at 12:30 P.M., just in time for lunch. Dad had a blue-tinted tuna-salad sandwich, a bowl of pear slices, and a can of Nepro. After meeting with Susan the other day, I had downloaded a calorie-counting app for my iPhone and was now tracking his calorie intake. Unlike most people, he needed to gain weight, so I kept track of his intake and continually encouraged him to eat more.

Immediately after lunch, Stan returned to Houston. With Dad’s partner-in-crime gone, Dad wanted to take a nap. He had just eaten a fairly substantial meal, so we didn’t want him to lie down. Instead, he slept for two hours while sitting on the couch.

A few minutes after he woke up, he started vomiting in the bathroom sink. The nausea hit him fast but passed in about 20 minutes. When he felt a little better, he wanted to lie down on the bed. About an hour later he vomited again. Dad might have had the upset stomach, but I was rattled. We had given him a couple of bolus feeds today, but even at the faster rate, it still took more than an hour for the pump to deliver one cup of the Nepro. I called my lifeline, the Home Care on-call nurse, and told her about Dad’s vomiting. I also sent email to the nurse at Dr. Pfanner’s office to let her know about Dad’s vomiting. I knew that I wouldn’t hear from the gastroenterologist’s nurse on a Sunday, but I hoped that I would hear from her early on Monday. The on-call nurse returned my call, but she wasn’t helpful and did not stop by to see Dad.

Still feeling a little unsettled, Dad stayed on the bed until almost 5:00 P.M., and then he joined us in the living room during happy hour. Unsure about what we should feed him, we gave him a cup of shaved ice to see how he could handle it.

At 5:30 P.M., we ate dinner and Dad had cottage cheese and some sliced peaches, which we hoped would be easy for him to digest. After dinner, we played cards until 7:45 P.M. when I was declared the winner.

Shortly after 8:00 P.M., Dad had received his nighttime meds, a breathing treatment, and a bit of anti-itch lotion, and he was ready for bed. We all hoped that the lotion would remedy the itching for the entire night so that he, and we, could sleep.

January 11. The Kangaroo pump alarm sounded at 3:15 A.M., and woke Dianne. After she refilled the tube-feed bag, she noticed that Dad was awake, and scratching his back. She got up again and applied more of the anti-itch lotion to his back.

Around the time that Dad fell asleep, I got up, donned my scrubs, and headed downstairs to the office. Around 5:50 A.M., I heard him coughing. I stopped what I was doing to visit with him for a few minutes, and I encouraged him to suction himself. After he used the Yankauer suction wand for a few minutes, I administered his morning meds and trach care. When I returned to work, he finished his morning routine with Dianne and got dressed. Before he ate breakfast, Dianne administered his breathing treatment.

After Dad enjoyed another breakfast of Cream of Wheat and pears, Dianne hooked him up to the tube feed. She then coached him through all of his exercises, except for his physical therapy exercises. Brenda was scheduled to stop by later this morning, and Dianne didn’t want Dad to tire before she arrived.

We had a full schedule of therapists and nurses today, starting at 10:00 A.M. Dad needed to have his trach changed today, so I corralled him at 9:00 A.M. and took care of the change before Brenda arrived. The diameter of the new trach tube was smaller than the old ones, and it slid into the stoma easily, but there seemed to be a bit of a gap around the trach. Fortunately, the trach dressing completely covered the stoma. I wondered how long it would take the diameter of the stoma to decrease for a person who was 87.

Brenda arrived at 10:45 A.M. for Dad’s physical therapy session and was very pleased with Dad’s progress. She agreed that Dad could try transferring in and out of the car. Getting in and out of a car might seem simple, but this type of transfer is difficult. With an SUV, the transfer into the vehicle is difficult because you have to lift yourself into the vehicle. With a car, the transfer out of the vehicle is difficult because it requires some strength in your legs and core. Everyone was thrilled when Dad successfully transferred in and out of the SUV. Being able to negotiate a car transfer successfully was the first step to freedom from our dependency on public transportation. Because none of us had the strength to manhandle the wheelchair, Dad’s reliance on the HOP’s wheelchair lift would continue as long as he might need a wheelchair on either end of an excursion. Giving up public transportation for the trip to dialysis would require that he was consistently strong enough after dialysis to transfer in and out of cars. Although Dad was not strong enough to start riding in the family car to dialysis and the doctors’ offices, he would soon be able to visit his barber.

Brenda said that she was also very pleased with Dad’s balance. I shared my personal goal with her, which was to get Dad to church on February 14, Valentine’s Day. Brenda said that based on his current progress, she couldn’t see any reason why he wouldn’t be ready for this type of an outing. After all of the fun in the garage, Brenda ushered Dad back into the house for a rigorous workout.

Moments after Brenda’s departure, Stephanie, the nurse, stopped by with some much-needed supplies, including covers for Dad’s dialysis catheters and 4×4 gauze sponges. The dialysis covers that I had purchased were too large. We asked her about Dad’s itching and the little bumps on his back. She encouraged us to keep on doing what we were doing, but if the itching and bumps didn’t clear up within a week, she said that we should make an appointment for him to see a dermatologist.

everflo-oxygen-concentrator-5-liter-b73 — Condenser

It had now been one week since Dad’s trach was red capped. The bedroom was quiet without the condenser, 50 PSI system, and nebulizer that heated the room, and Mom wanted them removed. I finally got in touch with American HomePatient and asked them to remove these noisy, heat-generating, and large items.

Before Kristen arrived for Dad’s 2:00 P.M. swallow therapy session, he ate another meal of cottage cheese and peaches. In addition to Kristen’s delightful personality, Mom and Dad loved her punctuality. Dad asked Kristen if he could drink milk, but she said that it was a thin liquid and must be thickened. He wanted milk and said that he would try it; however, it took only one sip of the thicken milk for Dad to decide that he would hold out for the real thing. Kristen and I spent most of the remaining time of this session trying to convince him to resume eating. Since his vomiting episodes yesterday, he had subsisted on a diet of cottage cheese, Cream of Wheat, and fruit slices.

Julie, the dietitian from Dr. Pfanner’s office, called me today about the message that I emailed her yesterday. I told her about Dad’s vomiting, and she couldn’t think of any reason for it, not based on anything that we were doing. She said that we could maintain the 75 ml/hour bolus rate today for the tube feed, and then increase it to 100 ml/hour tomorrow.

Between Kristin’s advice to Dad about eating and Julie’s assertion that we seemed to be taking good care of him, Dad ate pizza and pumpkin pie for dinner. He seemed to be fine for now, but I wanted to know what caused the vomiting.

After our game of Oh Hell, which I won, we started ushering Dad to bed at 7:40 P.M. He was still very itchy and required the anti-itch lotion, but at least tonight marked the final night of his breathing treatments. Tomorrow was another dialysis day, and I hoped that he would get a good night’s sleep.

Today, a shower. Tomorrow, a proper toilet?

Published on November 14, 2017November 14, 2017 by mellowdee551 Comment

January 5, 2016. I had stayed up too late the night before and Dad had interrupted Michell’s sleep, so she and I were both moving slowly this morning. I took a short break from work, and Michell and I woke Dad at 4:10 A.M. With a little assistance from Michell, Dad was up, dressed, and ready for his Cream of Wheat and peach slices by 5:00 A.M. It was fortunate that he was ready early because the HOP bus arrived at 5:45 A.M., which was on the early side of their pickup time window. It was a danged cold day winter day in central Texas, and I was glad that I had to attend a meeting and could not escort Dad and Michell out to the bus.

During Dad’s dialysis session, 1,200 ml of fluid was removed, which was much less than most sessions. When Dad and Michell arrived home at 12:15 P.M., he announced that he was going to walk after lunch. The four of us ate a light lunch and I served Dad a small amount of mac-and-cheese and fig jam. Dad said that he would like to take a short nap and get up at 1:30 P.M. As soon as he transferred from his wheelchair to the bed, I administered his final dose of antibiotic for his second bout of CDiff. Unfortunately, within a few minutes he started vomiting. I had assumed that because I had given him the pill on a full stomach I didn’t need to also give him a Zofran pill, but I was wrong. At least we were finally finished with this course of medicine. Because of this little interruption in his plan, Dad decided to postpone his walk until 2:00 P.M.

When Dad woke from his nap, Michell got Dad’s walker, but as soon as he started to walk, he stumbled. After walking tentatively for about 10 minutes, Dad decided that he was too tired to continue. He was very upset that he felt so weak and winded after just a few minutes, and he asked to lie down on the bed for a few minutes.

When Dad woke up at 3:45 P.M., he complained about itchiness, so Michell gave him a sponge bath and changed his bed linens. After Michell encouraged him to exercise more, he agreed and said that he was now ready for some walking.

We had a very nice happy hour, and then we had leftovers for dinner. I still tucked my chin when he swallowed, as if I could will him to practice the correct swallowing techniques. We got a late start on cards, and Mom eventually won. By 8:00 P.M., Michell and I accompanied Dad to his bedroom, and I administered another breathing treatment before he went to bed. I could not believe how much his oxygen saturation had improved since his trach was red capped. When I checked his oxygen saturation tonight, it was 99%, which was higher than it had been since he had come home. After administering his trach care, I must not have replaced the red cap securely. Before I left his room, he coughed, which propelled the red cap across the room. Fortunately, I had a spare that I could use.

At 11:00 P.M., I heard Dad calling for Melissa, which is what he usually called Michell. He had been stumbling over the aides’ names since he’d been home, and they had gotten to the point that they responded to their aliases. I ran downstairs to see what he needed, and he said that he wanted to know if it was time to get up. Sheesh.

January 6. The downside of having Dad’s trach red capped was that without the noisy oxygen concentrator, I could more clearly hear what was being said in his room and I could hear every squeak of his creaky bed. At 2:00 A.M., he woke up and announced that he was ready to get up. Fortunately, Michell convinced him to stay in bed for a couple of hours longer.

By the time that Dad woke up again at 4:00 A.M., I was logged on to work in the office next to my Dad’s bedroom. While I worked, Michell was able to convince him to run through all of his exercises. Michell departed shortly before 10:30 A.M., just after Dianne arrived at 10:00 A.M. Michell had been gone for about five minutes when she reappeared back in the house because her car had a flat tire. I belonged to AAA-Texas and called for roadside assistance in our driveway.

While she waited for more than an hour for aid to arrive, Michell ate lunch with us. Dad ate ½ cup of bluish banana. I was pretty sure Dad couldn’t wait until I quit adding blue and green food coloring to his food. It really did make the food look disgusting.

After lunch, Dad took a short nap and woke up a few minutes before Kristen arrived for his swallow therapy session at 2:00 P.M. Today was another milestone and a fun day with Kristen. Once again, Dad wanted to review the list of foods that he could eat and see what he could add. When he asked about ice cream, Kristen said that ice cream was fine, and then she asked Mom if we had any ice cream in the house. We did, and Dad enjoyed a small bowl of vanilla ice cream for the remainder of their session.

Moments after Kristen left, Kathleen, the physical therapist, arrived with a physical therapy aide who would help Dad with his shower. It had been almost eight months to the day since his last shower, and was he ever ready. We spent about 30 minutes covering his dialysis ports, using some shower shields and tape that we had purchased, based on recommendations from Sue, Dad’s dialysis nurse practitioner. Although my parents have a large bathroom and shower, both were a little crowded. Dad, Dianne, and the physical therapy aide were all in the shower. Kathleen orchestrated the process from outside the shower and Mom stood by with towels. After helping to cover his dialysis ports, I returned to work in the next room. It seemed like only a couple of minutes later that the physical therapy aide noticed some condensation buildup under the shower shield, and I heard her end the shower. Dad was far from squeaky clean, but I’m pretty sure that he lost at least a couple of layers of dead skin. When Dianne tried to apply some lotion, Dad balked at having anything put on his skin.

During dinner, we all ate meatloaf, green beans, and ice cream, including Dad. I worried over every bite that he took and I don’t know how I avoided heartburn. In addition to tucking his chin when swallowing, Kristen had insisted that Dad not talk while eating. As a kid, I remember hearing that we should not talk while eating, but most people are pretty bad at following this guideline. For Dad, it was especially important, and we were having a difficult time getting him to remember. I encouraged everyone at the table to eat in relative silence.

We had an early game of cards and Dad was in bed before 8:00 P.M., and I hoped that he would stay in bed throughout the night. About 30 minutes later, Dad woke up, complaining of itching, and he let Dianne apply some lotion to his back.

January 7. Now that the bedroom was quiet, Dianne was more sensitive to the annoying alarm on the Kangaroo pump when it ran out of Nepro. It woke her at 2:15 A.M., and Dad woke up while she was replenishing the empty bag, but only for a few moments.

When I woke up a little after 3:30 A.M., I couldn’t hear sound from the baby monitor. A couple of minutes later, I heard the bed creak and Dianne told Dad that he could not get up until 4:00 A.M. She was short, but she could be forceful.

After Dad got out of bed, his morning routine went like clockwork, and the bus left with him onboard at 6:00 A.M. I had meetings all morning and was on the phone when Dad and Dianne returned home at 11:25 A.M.

During dialysis, they removed 2,100 ml of fluid, and Dad was a little tired and wanted to take a little nap before lunch. Mom had to leave for a haircut before Dad woke up at noon, but he ate lunch with Diane and me.

After lunch, Dad was ready for another nap. While she was sitting in the side chair in Dad’s room, Dianne also fell asleep. While they napped, I went to the pharmacy to pick up a prescription for Dad. After Dad and Dianne were up from their naps, Becky, the owner of One on One Personal Care, stopped by for a visit. Becky said that Gale still didn’t know what she wanted to do. She said that Dad looked great, and then she left. We had happy hour at 5:00 P.M., followed by sloppy joes and ice cream for dinner. Dad seemed to cough a bit more this evening, which concerned me, which wasn’t surprising.

I won at cards and by 8:15 P.M., I had administered his nighttime meds and breathing treatment, and I was turning out the lights. His breathing had seemed a bit labored, but his oxygen saturation still registered 96%.

He woke up a couple of times during the night to clear his secretions, but was able to return to sleep.

Today was the 100^th day since Dad’s discharge from the CCH and on home care.

January 8. I had been working for almost two hours when Dad woke up at 5:30 A.M. Shortly after he got out of bed he proclaimed that he was finished with using the bedside commode. Instead, he would start using the “proper toilet,” which was located inside a toilet room. After 100 days at home with Dad, I decided that instead of stating the obvious, that he wasn’t strong enough to use the toilet, I said that we would let him see if he could maneuver himself on and off of it before he needed it. If nothing else, we could speak with the physical therapist about this new goal. I guess I shouldn’t have been too surprised that he was fed up with the bedside commode. During most of his 148 days in the hospitals, his primary goal had been to use the toilet in the bathroom. There were so many daily activities that we take for granted that he had not been able to do. He had made some great strides, but as he slowly regained his health and strength, he was becoming more impatient to resume his previous life.

In addition to the usual Friday visits, the observance of the holidays had caused some reswizzling of schedules, so Dad would see his nurse and all of his therapists today. The nurse came by first this morning, followed shortly by Brenda. While Brenda was here for Dad’s physical therapy session, I told her of Dad’s desire to use the toilet, and she agreed to be present while he tried. He was able to sit on the commode, but could not get up. Brenda repeated an earlier suggestion to install grab bars in the bathroom, and this time, Dad seemed to seriously consider her suggestion. Following the toilet practice session, Brenda put him through the paces.

Shortly after Brenda left, Janet arrived for Dad’s occupational therapy session. During his therapy session, Mom and I ate lunch. I left shortly after 12:30 P.M. for the dialysis center to see Susan, the dietitian. She and I agreed that Dad needed to consume at least 2400 calories per day to gain the weight he needed and to meet his nutritional requirements. Shortly after I returned home at 2:00 P.M., Kristen arrived for Dad’s swallow therapy. During his session with Kristen, Dad asked if he could have bread. Instead of directly answering his question, she asked Mom if she would prepare him half of a turkey sandwich. He nibbled on the sandwich and had all but consumed it by the end of their session. Although she said that Dad could eat bread, Kristen did not want him to eat toast, because of crumbs that he might aspirate.

I enjoy making pizza from scratch, and during our happy hour, I prepared a pizza for dinner. To my surprise, the guy who just a few days earlier had refused to eat more than 1/8 cup of food at any meal, ate 1/8 pizza. And just three hours earlier, he had consumed a small turkey sandwich.

After our pizza dinner, we played cards and Dad won, beating Mom by one point. Dianne and I administered his nighttime meds and breathing treatment and had him ready for bed by 8:20 P.M.

After I went to bed, Dad had another night of itching. Through the baby monitor, I could hear him coughing, and shortly after 10:00 P.M. I went downstairs and convinced him to use his Yankauer suction wand to handle his own secretions. His swallowing and eating seemed to be improving, but I couldn’t help but worry that he might aspirate or might have already aspirated.

I wished Dad would adhere to a few of Kristen’s guidelines so that I wouldn’t worry so much. I feared that all this worrying would make my hair turn gray.

Capturing the elusive red cap

Published on November 7, 2017 by mellowdee554 Comments

January 1, 2016. A couple of minutes after midnight I heard grunting, sounds coming through the baby monitor. When I went downstairs to check on Dad, he said that he needed to get up now. As I started to unhook his feeding tube, I asked him why he needed up. He said that he was annoyed because he had overslept and had missed the Rose Parade. When I explained to him that it was midnight and not noon, he looked relieved and smiled. As long as I was there, I suctioned his trach, and after we wished each other Happy New Year, I was on my way back upstairs by 12:45 A.M. He had had a lot of secretions, so I was grateful for the false alarm.

At 6:00 A.M., I heard Dad and Michell talking and decided that it was time for me to get up to administer Dad’s morning meds and breathing treatment. His secretions seemed a bit thinner now, but his oxygen saturation was still too low for me to consider lowering his oxygen.

As I had learned at midnight, Dad’s big plan for the day was to watch the Tournament of Roses Parade, a New Year’s Day tradition. However, the parade wouldn’t start for almost three hours, which allowed him time for a delightful breakfast of green oatmeal, and some walking and sink exercises. The best place to watch the parade was in my parents’ sunken sunroom. Stan, Michell, and I spent a few minutes working out the logistics for getting him out of the wheelchair, down the step and transferred back into the wheelchair so that he could continue receiving tube feed and oxygen without damaging the floor. It seemed like it should be a simple maneuver, but Dad’s tubes and wires complicated his already-limited mobility.

Tracy, the nurse, dropped by at 1:00 P.M. and said that although Dad was still suffering from the effects of his cold, she thought that we were doing everything right. At 2:00 P.M., Kristen arrived for Dad’s swallow therapy. I was continually impressed by the home-care caregivers as they kept up their regularly-scheduled visits during the holiday. I had worked in corporate America for more than 20 years, and only the newest employees worked around, let alone on, the holidays.

Dad was still very congested today. Before we played cards, I had to suction him so that he could enjoy our game. By 8:30 P.M., the first day of 2016 was just about over. After I administered Dad’s meds and a breathing treatment, I treated myself to a breathing treatment to combat my own chest cold. I had never used a nebulizer and was surprised at how well it was clearing up my congestion.

January 2. During the night, I heard coughing and talking through the baby monitor. Dad’s secretions had kept him awake, but Michell was able to convince him to suction himself. Michell was concerned when she saw blood in his secretions, but attributed the blood to a nosebleed that he had had a few hours earlier.

When Michell helped Dad out of bed at 5:00 A.M., I also got up, and after changing into my scrubs, I went downstairs to see how he was doing. After administering a breathing treatment, the morning meds, and letting Dad wash his face and brush his teeth, Michell washed his hair with some no-rinse shampoo. Before Gale had left us, she had encouraged me to purchase some no-rinse shampoo, but I couldn’t find it in our local stores. I finally found it online on December 26, and it had arrived a couple of days ago. I was pleasantly surprised at how well it worked.

After Dad was as clean as Michell could get him without a shower, we all ate breakfast together. Mom prepared Dad a special breakfast of Cream of Wheat topped with a couple of peach slices. When we finished breakfast, I administered another breathing treatment, and then Mom and I went shopping in Waco, approximately 35 miles north of Temple, leaving Stan and Dad to play cribbage and stay out of mischief until our return at 1:00 P.M. Between Dad’s long hospitalization and Mom’s stroke, Mom had lost a lot of weight and needed some new clothes. The shopping trip also gave us a much-needed respite and a chance to spend some time together.

After Mom and I returned home, I ran a few errands in Temple and picked up another prescription for Dad. Before I left, I told Dad that I would change his trach when I returned, but by the time that I had returned, he was sleeping. Not to be deterred from my goal, I changed his trach as soon as he woke up. In the seven days since I had last changed it, it had become pretty gunky, but the secretions had not solidified in the trach. Dad hated to stay in the bedroom, which was the only place where he received the moistened oxygen. I often worried that secretions were hardening in his trach, which would then narrow his airway.

Dad never kept the outside Christmas decorations up past New Year’s Day, and he was chomping at the bit to have them taken down. With the assistance of Stan and Michell (the tallest person in the house), Dad had the decorations removed and packed for next year.

Now that Dad was able to eat, Mom and I tried to come up with menus that were appealing to everyone in the house. We also had to ensure that the food was not red or white so that I could monitor Dad’s secretions for signs of aspiration. Mom wanted a side dish to accompany the roast that she planned for dinner. I reminded her that many trendy restaurants offered mac-and-cheese as side dishes. Not only was mac-and-cheese tasty, but it was also orange. Keeping with the orange theme, Mom also made butterscotch pudding for dessert. As we had hoped, Dad was able to eat the mac-n-cheese and pudding.

After dinner and our daily game of Oh Hell, I gave Dad another breathing treatment of albuterol. This treatment seemed to kick up his secretions, and I had to remove a lot of secretions before he went to bed.

Shortly after Stan and I went to bed, we heard an exchange between Dad and Michell through the baby monitor. Evidently, Dad was itching so much that he agreed to let Michell give him a mini sponge bath. More startling than him agreeing to the bath was that he agreed with her that he should have let her do it several days ago when she first suggested it.

January 3. When the alarm went off at 3:40 A.M., I could barely drag myself out of bed, and Michell was also forcing herself to get up. After walking around like a zombie for about 30 minutes, I finally woke Dad at 4:10 A.M. I wanted to let Mom sleep, so I fixed him a breakfast of Cream of Wheat and peaches. To ensure that I fixed his breakfast as Mom would, Dad monitored and corrected me while I prepared his meal. After breakfast, we were able to squeeze in a saline breathing treatment before the HOP bus arrived to take him to dialysis.

While Dad and Michell were at dialysis, Mom and I went to church. When we returned home at 12:30 P.M., we found Dad and Stan involved in a game of cribbage. After Dad played a most spectacular hand and beat Stan, we had lunch. Dad ate only a small portion of applesauce, so I was glad that he was still receiving Nepro. Dad had lost so much weight that we, and the dietitians, could not justify reducing his Nepro.

As soon as lunch was finished, Stan returned home to Houston. The holidays were over, and tomorrow was the first working day of the new year. Dad was ready for a nap, but because of his aspiration precautions, he could not lie down for an hour after eating. Because he had to sit upright, he decided to go into the sunroom to watch the Texans football game. Michell and I were getting better at this transition. We still hadn’t told the physical therapist that we were letting him step into this room. By 3:00 P.M., the football game finally lulled him into a drowsy state while sitting in his chair. Before he fell asleep, we helped him out of the sunroom and into his wheelchair so that he could go to his room for a nap.

I woke Dad at 4:30 P.M. so that I could administer some meds and a breathing treatment before happy hour. Unfortunately, our happy hour was anything but happy. I don’t remember how it started, but we had a terrible argument about his exercising. Lately, Michell had been unable to get him to exercise, and he made it very clear that he would exercise when and if he felt like it, and it wasn’t doing any good anyway. We had a terrible argument about this, his new lot in life, and my new terse way of talking to him. The primary reason that we had hired aides to assist us was to ensure that we could maintain some semblance of normal familial relationships. When a family member changes roles from child or spouse to the caregiver, it can strain normal relationships. I had been responsible for taking care of him for a few months and had been his uber-advocate during his hospitalization. Now that he was getting better, he was beginning to resent my telling him what to do. The more that he angrily pushed back on my efforts to care for him, the more ready I was to pack my bags and go home. Following our exchange, I heard Dad tell Mom that “she was the only one that mattered.” I was beginning to feel a bit unappreciated.

I had prepared a salmon casserole for dinner, which Dad was able to eat. My parents have a fig tree, and during the summer Mom had made some fig jam, which Dad enjoyed for dessert. Everything seemed very civil for the rest of the evening, but I was still a bit miffed.

No amount of arguing would keep us from playing Oh Hell after dinner. When we finished playing cards, Michell and I administered his meds and breathing treatment, and Dad was ready for bed by 8:30 P.M. From what I heard through the baby monitor, Dad needed the Yankauer suction wand around 10:30 P.M., but I didn’t hear him again that night. During my regular call with Stan, I unloaded my frustration about my situation here and my desire to leave. At the end of our call, I was somewhat less agitated.

January 4. Today was the first working day of 2016, and I was up and logged on to work before 4:00 A.M. Today was an important day for Dad, and one that I had been looking forward to and nervous about for a couple of months. The appointment with the pulmonologist was very important, although I didn’t think that Dad realized its importance.

Tracy, the homecare nurse, stopped by at 9:15 A.M., and said that Dad’s lungs were clearer, so it seemed that the breathing treatments that she had recommended had helped. I took a break from work at 11:15 A.M., and the four of us had a quick lunch. Shortly after lunch, the HOP picked up Dad and Michell; Mom and I followed the bus to the clinic for Dad’s 1:00 P.M. doctor’s appointment.

When we were ushered into the examination room, Dad’s world began to change. After Mom and I provided a short update on Dad’s condition and treatment since his discharge, Dr. Badri Giri said that he was surprised that Dad had not seen Svenja (the trach goddess), or anyone else in the medical profession, about the trach. He immediately paged Svenja for a trach consult. Although she was available, she was about as far from us as she could be while still on the hospital grounds, but would be there within 10 minutes. While waiting for Svenja, Dr. Velazco stopped by, and there were hugs all around. Dr. Velazco, another pulmonologist, had not seen Dad since late August, and he was thrilled to see how Dad’s condition had improved. The hugs continued when Svenja arrived. She and I spent a few minutes catching up and then she started to check out Dad’s trach and stoma. I respected and liked Svenja and was nervous that she would find a problem that was related to Dad’s care. When she said that Dad’s stoma looked good, I exhaled the breath that I didn’t realize that I had been holding. After she and the doctor conferred for a few minutes, they decided to downsize Dad’s trach from a size 8 to a size 6 trach, which meant that the outside diameter of the trach was smaller. The smaller diameter would still be large enough for us to keep using our FR14 suction kits and would enable the stoma to start closing. She deftly replaced the trach within a few moments. Svenja and the doctor had considered removing the trach but decided to wait about a month until he completed more swallow therapy. Instead, she red-capped the trach, which meant that Dad was now breathing through his nose and not the opening in his trach. Dad had not breathed through his nose since June 8, 2015, almost six months earlier. On the way out, we saw Dr. Hayek in the hall and stopped to say hello to him. Dad had no recollection of Svenja and Drs. Hyack and Velazco, but these three health care providers had been important players in Dad’s recovery at Scott & White Memorial, especially after he aspirated in July. On our way out, we scheduled Dad’s follow-up appointment in February.

We returned home from the doctor’s appointment at 3:00 P.M. Michell was able to engage Dad in some swallow-therapy exercises, and I logged back on to work for another couple of hours.

The red-capped trach introduced many changes in our lives. For starters, we no longer needed the very noisy and heat-generating oxygen concentrator and attached nebulizer. We also would not need to use the oxygen tanks. The difference in Dad’s bedroom was startling, starting with the quiet, which was almost deafening. The temperature dropped at least five degrees, which would be a welcome change for the aides, who sweltered during the night. I would still need to administer trach care, which included changing out the trach every week and checking for aspirated food particles in his secretions. The smaller diameter of the trach would make handling secretions easier for Dad, too. When I checked Dad’s oxygen saturation, it was 100%!

We were all in much better spirits during happy hour and dinner, not to mention cards. Once again, I was practically giddy with excitement about Dad’s progress, yet on edge that something would happen that would cause Dad’s condition to regress.

After our full and exciting day, Michell and I administered Dad’s meds and trach care, and he was drifting off to sleep by 8:15 P.M. After the wonderful events of the day, I couldn’t wait to call Stan to share the good news.