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.
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.
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.
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.
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.
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.
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.
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 
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.
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 
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 
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 
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.
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 
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, 
The red-capped trach introduced many changes in our lives. For starters, we no longer needed the very noisy and heat-generating 
The parade of provider assessments started with Kathleen, the physical therapist, at 10:30 A.M. She was followed at 11:30 A.M. by Janet, the occupational therapist, and at 1:30 P.M. by Stephanie, the nurse. During Kathleen’s visit, she asked how Dad was being transported to dialysis. We told her that we had wanted to use the 
Shortly after Mike left, Dad was ready for a nap, and he slept until it was time for him to swallow some ice chips. As he wheeled himself from his room, he stopped by the office to let me know that I should stop for the day because it was time for happy hour.
Gale had barely pulled out of the driveway when Brenda arrived for Dad’s physical therapy session. Brenda put him through his paces, having him walk 68 feet, march in place, stand on one foot, and stand on his toes. Dad was exhausted when she left and was ready for a nap. However, instead of sleeping until he woke up himself, he instructed Michell to wake him by 2:00 P.M.
Dad and Gale slept until 6:45 A.M. Along with the water that we normally used when administering his meds, during the day, I planned to administer two additional cups of water into Dad’s G-tube to help avoid any more issues with dehydration.
Not all of our traditions fell by the wayside, however. Dad and Stan still enjoyed the traditional football games and spent many hours visiting. I gave Dad some ice chips and encouraged him to practice swallowing. Because watching football could be so exhausting, Stan and Dad recharged themselves by napping after lunch. At 4:00 P.M., Gale woke Dad and I woke Stan. Stan and I went to Walgreens to purchase some medical supplies, and Gale tended to Dad’s wrist, which I had accidentally wounded a couple of days earlier.
November 27. Dad had a very restful night, which meant that we all slept well. He called for the urinal around 1:00 A.M., and then slept until Gale woke him at 4:00 A.M. Because of the Thanksgiving holiday, the Thursday dialysis sessions had been rescheduled to Friday. The EMS dispatch office called a couple of times to adjust our pickup time and finally settled on 5:45 A.M. Before Dad and Gale were picked up, Gale told me that she thought that the 
During happy hour, I was able to shoot a group photo of the family and Gale. I don’t recall what prompted the comment, but my mother said that when I was in college, I forced her to have her ears pierced. This comment surprised and concerned me. Anyone who knew my mother would question my ability (or my father’s) to force her to do anything against her will.
When the wheelchair van picked up Dad at 5:45 A.M., I followed the van to the dialysis center so that I could talk with the charge nurse about his fluid removal. Sue had assured me that they would restrict the amount of fluid that they removed, but because this was a holiday weekend and a Sunday, I wanted to ensure that the well-meaning skeleton staff would follow those orders. I would not have him dehydrated again during dialysis. The charge nurse acknowledged my concerns and said that she would speak to Dad’s nurse.
While Stan, Mom, Gale, and I ate lunch, Dad retired to his room for a nap and was still sleeping when Stan left for our home in Houston. Dad woke up shortly before 4:00 P.M., which seemed like a good time for me to change his trach. I was finished and had cleaned up after myself well before happy hour. Although we were thrilled to have Dad swallowing ice chips, he would have preferred something a bit warmer to eat during happy hour.
When Michell and Dad were picked up by the EMS wheelchair van service, Stan and I drove to the dialysis center. I had been very upset that they had removed 2,500 ml from Dad on Thursday, and I intended to express my concern to the charge nurse. For each 1,000 ml removed, a dialysis patient loses 1 kg. After I had explained Dad’s situation, she said that they would just clean his blood today and not remove any fluid from him.
After I saw Dad weighed, Stan and I left Dad and Michell at the dialysis center so that we could run several errands before Dad returned home. Everything worked in our favor, and we were home by 10:30 A.M. As it turned out, Stan and I didn’t have to rush. Dad and Michell had to wait for the van and didn’t return home until after noon.
Shortly before 2:00 P.M., Dad took a long nap on the couch while we were in the living room because he didn’t want to be away from us. I think that he thought that sleeping on the couch would ensure that he didn’t miss happy hour, but he slept through it. Dozing on the couch might not seem like a big deal, but it was another first for him in his post-hospital life. We had to rely on the oxygen tank and trach bib because we couldn’t bring the oxygen concentrator and nebulizer to the living room, but he was able to receive Nepro during his nap. He slept for about four hours, and we woke him when we finished dinner.
At 10:30 P.M., the baby monitor station in our room started alarming. After quickly putting on my glasses, I could read the message on the display that indicated that our station was unlinked from the base station. As I tried to turn on the light, I discovered that the 
By 8:00 A.M., Dad was back in the wheelchair and was reading the Sunday newspaper. When Mom and I left for church, he and Stan were playing cribbage. After a couple of games of cribbage, Dad wanted to lie down and rest. According to Michell, he fell asleep as soon as his head hit the pillow. Usually, he liked for us to wake him before Stan left for Houston, but today he asked that we let him sleep.
November 23. Dad was very slow in waking up this morning. When I heard him and Michell talking, I took a break from work to administer his morning meds and trach care. Tracy, one of our RNs, called around 9:00 A.M.to see if we could be her first stop this morning. I was very low on the Mepilex dressings that American HomePatient didn’t provide and asked Tracy if she could bring me a few to tide me over until I could order more from Amazon. She said that she would stop by the office and pick up a couple for me. I was very fond of Tracy. She was a wonderful nurse and the mother of a special needs child. She was one of my favorite nurses and a very caring person. She arrived at my parents’ home at 10:00 A.M. with my requested dressing in hand. After her brief examination of Dad, she said that his bed sore was practically healed. With the way that Dad had been feeling, I didn’t want to take him back to the wound care doctor, which would most likely take the entire afternoon. She said that I could safely cancel his appointment with wound care today. Also, she didn’t think that I would need any more of the expensive Mepilex dressings. I happily accepted the good news and canceled the appointment with the doctor and the EMS wheelchair van service.
While Tracy was visiting, Dad spent the entire time either sitting or lying on the bed, so she didn’t see how weak he had become. Shortly before Tracy arrived, Michell had had to hold up Dad to keep him from falling when he was trying to get dressed. I hoped that we would hear something soon from Dr. Pfanner’s office.
Because he was feeling better, it seemed like a good time for me to take a break and change his trach. I set up my TV trays to do that. I still hated this weekly task, and I had a knot in my stomach throughout the procedure, but I was accomplishing it in less time.
About 30 minutes after Kristen left, Sally and Ray, dear friends of my parents (and me) stopped by for a visit. In about a month from now, they would move from Temple to New Braunfels. I saw Sally only a few times a year, but she is a delightful person and fabulous quilter and crafter of cards. Her husband, Ray, is also an interesting person who had been involved in the space program, another one of my interests. I could practically recite the dialog from the Apollo 13 movie, and Ray had been involved with this launch at NASA. I would miss them both after they moved from Temple. Dad came out for a few minutes to visit with them. The visit lacked our usual spontaneous conversation. They hadn’t seen Dad in almost a year, and I suspect that his appearance was a little shocking and was the proverbial elephant in the room. It didn’t help that Dad wasn’t feeling well.
Shortly after Sally and Ray left, I administered another Imodium pill into Dad’s feeding tube. Although he was feeling a bit better, he still was not better.
During his dialysis session, Dad had the nurse call the EMS dispatch office 15 minutes before his session was scheduled to end so that he wouldn’t have to wait any longer than necessary for his ride home. When Michell told me that they had removed 2500 ml from him, I was flabbergasted. When he left there, his dry weight was 138.28 lbs. He was probably dehydrated when he got there, and then they removed over two liters of fluid from him. I couldn’t help but question the judgment of the nurse who made the decision to remove almost twice the usual amount of fluid.
When Dad and Michell arrived home at 11:15 A.M., Dad was wiped out and was not feeling well. Within a few minutes after getting back on the bed, he was nauseous, and his trach collar was loose again. I tightened the collar, but he still didn’t feel well. I was becoming very concerned about him and called the Home Care nurse. Stephanie was working today and arrived shortly before 1:00 P.M. in response to our call. After checking Dad, she said that heard congestion in his lungs that she had not heard before. Also, his oxygen saturation never exceeded 93% while she was there. My concern for Dad escalated when Stephanie advised me to call 911.
Although Dad’s condition wasn’t any better, I was somewhat relieved by the EMTs’ assessment, and that we were able to avoid the emergency room. Dad was scheduled to see the gastroenterologist tomorrow, so I just needed to get him through the night. I called Sue, and she refilled Dad’s prescription of ondansetron (Zofran). Mom drove to the pharmacy as soon as I got off the phone with Sue. By the time that she returned home with the prescription, Dad was in a deep sleep. I eventually administered the Zofran in his feeding tube shortly before 5:00 P.M.
Stan left work early and drove from Houston to my parents’ home. He arrived shortly after 5:00 P.M. and just in time for happy hour. Shortly after 6:00 P.M., Dad went to his room and read the paper while we had dinner. After dinner, we played Oh Hell and hit the hay pretty early.
We received a steady stream of visitors today, starting with Janet, Dad’s occupational therapist. She and Dad had another good workout today, and I could hear them chatting nonstop during their session. Before she left, Janet said that because Dad was progressing so well toward his goals, she would set new goals for him and extend his treatment for another month.
Since Brenda’s last visit with us, the monstrosity known as the Hoyer lift had been delivered and was in our garage. Brenda showed us how to place the Hoyer lift sling in the wheelchair so that it could be used when Dad arrived at the dialysis clinic. She also had Dad use the walker. He first walked 28 feet and then she had him walk an additional 48 feet. Shortly after she left, Stephanie, the nurse, arrived to check his vitals and his bed sore. Dad was pretty tired after all the exercise and he napped away the afternoon while I worked.
November 7. Although it was Saturday, we still had to prepare Dad for dialysis. I didn’t have to get up quite as early as for work, so I slept until 4:00 A.M., which was when I needed to wake Dad and Michell. It had been raining earlier this morning and we had already received a couple of inches of rain. To ensure that we could get Dad transported to the ambulance without him getting wet, I moved one of the cars out of the garage so that the ambulance could back in. The EMS dispatcher called us at 6:00 A.M. and told us that they were running late and would arrive around 6:20 A.M. At 6:22 A.M., we heard a knock on the door to the garage, and we opened it to find two EMTs. As we did every dialysis morning, we watched for the ambulance and we couldn’t understand how we had missed their arrival. We didn’t even hear them back into the garage. We had two personable female EMTs again today and they enthusiastically helped Dad onto the gurney.
When Stan and I returned home, we found that everyone was napping. Michell had fallen asleep in a chair in Dad’s room and Mom was sleeping in a chair in the living room. At 3:45 P.M., I heard familiar creaking noises from the baby monitor and entered the bedroom as Dad was trying to get out of bed. I didn’t know if he couldn’t remember that he couldn’t walk or if he was taking everyone’s comments to heart about how well he was doing, but he just would not ask for help when he wanted to get out of bed.
After Stan had left, Dad seemed a bit down. He commented that the therapists didn’t seem like they were “interested in moving him along.” We did our best to convince him that they had a plan and he was executing it well. I suspected that he was apprehensive about the appointment with the wound care specialist tomorrow, which didn’t help his mood. I also didn’t think that Dad judged his progress relative to his condition when he was discharged from the hospital, but rather from his condition before the surgery.
The waiting room was packed, and as I looked around the waiting room, Dad seemed to look healthier than the rest of the patients. The exam rooms were pretty small. Between Dad, a wheelchair, Michell, the doctor, a nurse, and me, there wasn’t much room to move. We had to perform some Rubix Cube moves to open the door to let the nurse and aides in and out of the room.
Tale of Two Parents 