They say that he has to go to rehab, but he says No.

March 27, 2018. Because I was concerned about how Dad fared during his first night after surgery, I didn’t sleep well and woke up just before 2:00 A.M. I hoped that he had slept well and that he had not tried to get out of bed during the night. Mom and I didn’t have much of an opportunity to visit with Dad yesterday after his surgery, but I had warned him that he might experience some confusion after his surgery. I knew that I would be spending a few hours at the hospital today, so I set up my computer shortly before 5:00 A.M. and worked for about four hours. Thirty minutes later, Mom and I arrived at the hospital.

noRehabCross3When we entered Dad’s room, we found that a nurse and a couple of nursing students were turning Dad in his bed. Until patients can get out of the bed, they must be turned every few hours so that they don’t develop bed sores. After Dad was resituated in his bed, Dr. Bolanos entered the room. Within moments, the two of them were arguing about Dad’s antibiotic suppressant drug. He insisted that the doxycycline gave him an upset stomach and that he hadn’t taken the pill in six months. She suggested that he take the antibiotic with food or with Zofran, which would prevent any nausea. He agreed but said that he would take only one pill a day and not the prescribed two pills. Fortunately, she avoided the subject of rehab during this visit.

Although Dr. Bolanos had steered clear of the contentious subject of rehab, Kim, the physician’s assistant, took the bull by the horns when she stopped by Dad’s room. While she was there, she described the different types of physical therapy available to patients and the patient requirements for each option. For Dad, she reinforced Dr. Bolanos’s recommendation for in-patient therapy at a rehab facility. As before, Dad insisted that he had to go home and take care of his garden and wife.

Dad_ot-paintShortly after lunch, Amy, the occupational therapist arrived and had Dad stand with the walker. Before Amy left the room, Brooke and Lisa, the physical therapist and her assistant, arrived. They had Dad stand up and sit down and then sit in a chair. While he was enjoying being out of bed, Pastor Tom entered the room. While Tom was there, he spoke of the many benefits of rehab. The pastors in that church always seemed to answer my prayers. Before Tom left, he urged Dad to get well quick because he needed a Christian in the church, which was a running joke between them. Tom had a very busy schedule this week, and Mom and I greatly appreciated his taking the time for a visit.

At 3:00 P.M. I returned to the house so that I could get in a couple more hours of work. I was feeling the effects of my sleepless night and drank coffee to keep myself awake until 5:00 P.M., which was when I logged off for the day. While I was working, my parents’ neighbor, Jane, dropped off a Cobb salad that she had purchased for us while she was in Austin. Mom and I devoured this much-appreciated gift for dinner.

March 28. Dr. Bolanos stopped us in the hall as we approached Dad’s room. She told us that Dad was very confused. He thought that he was at home and he was also having hallucinations. Also, during the night, he had gotten out of bed, and the nurses had found him on the floor when they responded to the bed alarm. To help prevent him from injuring himself, they exchanged his bed for one that could be lowered within inches of the floor. As if this news wasn’t enough, she added that Dad was argumentative and was still fighting the notion of going to rehab.

noRehabCross1When we entered Dad’s room, we encountered chaos. Dad was eating breakfast and arguing with Alisha, an aide who was trying to take his blood pressure, which was required before he could have his morning meds. He insisted that he would not take the meds, and wanted her to leave. Steve, the electrical technician, was also in the room, trying to repair a problem with a spastic call light and oversensitive bed alarm. It didn’t help matters any that Steve and a nurse were discussing the problems with the system.

I asked Alisha if she could leave so that Dad could finish his breakfast, and she agreed to come back later. As soon as she left the room, another woman entered the room. She introduced herself as Lisa, the nurse manager, and asked if we were having problems. I told her that the room had been like a sea of chaos when we arrived, which was not helping my father’s anesthesia-induced confusion or his mood. She took control of the situation and orchestrated the activities of the nurses, aides, and Steve until a relative calm settled over the room. The only challenge, which remained for a few hours, was the bed alarm and call light. Dad’s new bed did not have a built-in bed alarm and an attached call light. The nurses were using a chair alarm and the rigged-up system was somewhat faulty. I finally had Steve turn off the maddening bed alarm, promising to have the nurse turn it on when Mom and I left.

noRehabCross2Adding to the parade of people who dropped by was the case manager, who asked whether she should start looking for a rehab facility for Dad. Dad didn’t hear her question, and I quickly ushered her out of the room. Rehab was still a touchy subject, and I didn’t want us to launch into another argument in front of the case manager. I returned to the room and told Mom that she needed to see the case manager in the hall. While Mom was gone, she signed the appropriate paperwork to set the discharge process in motion. While Dad had been in surgery, I had asked Pastor Tom about Cornerstone, and he said that he thought (based on his visits to many rehab facilities) that it seemed like a good facility. We hoped that Cornerstone, which was within a couple of miles from my parents’ home, could accommodate Dad.

Mom and I had hoped to be with Dad during his next physical therapy session, but we hadn’t heard anything about today’s schedule. To ensure that we didn’t miss the session, I went to the cafeteria to buy lunch for Mom and me. While Dad enjoyed a lunch of pork chops, Mom and I ate yogurt and fruit. Dad admitted that his lunch was pretty good, which was practically an enthusiastic endorsement of the hospital food. We finally asked the nurse about Dad’s schedule, but she said that there was nothing on his chart today about him having physical therapy. With that disappointing news, Mom drove me back to the house so that I could get back to work.

noRehabCross3Shortly after Mom returned to the hospital, Pastor Tom returned for another visit. Tom told Dad how rehab had made a difference in his recovery when he broke his ankle after jumping from a plane while he was in the army. Although Tom’s words probably fell on deaf ears, I felt like we should have baked Tom a pie for trying to sell Dad on the notion of a rehab facility.

Shortly before I logged off from work, I answered a phone call from Cornerstone. Marie was calling to inform us that Dad had been accepted and that she wanted to make an appointment with Mom so that they could finalize the arrangements for his two-week stay.

Now, all we had to do was get Dad to agree to the transfer from the hospital to the Cornerstone facility.

 

Back at Scott & White Hospital. Oh, joy.

carCross1March 25, 2018. After last night’s disturbing phone call from Mom about Dad’s fall, I wanted to get an early start to Temple so that I could be there during Dad’s surgery. I was up by 5:30 A.M., called Mom 45 minutes later to let her know that I was coming, and left home at 7:40 A.M. Because of my early departure, and some good highway luck, I arrived at my parents’ home at 10:15 A.M. I quickly unpacked my car, drove to Scott & White Hospital, and made my way to room 566 in the south tower.

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

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

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

pegOutCross1When I finished making my phone calls, I returned to Dad’s room. Dr. Bolanos returned to the room a few minutes later and told us that they had noticed a spot on Dad’s heart that looked like a clot. Before they could operate on Dad’s hip, they would need to run some tests, which were scheduled for tomorrow. By now it was 12:30 P.M., and Mom and I were hungry and decided that we would leave Dad for an hour and go home for lunch. When we returned to Dad’s room, because his surgery was rescheduled for tomorrow, his NPO restriction had been lifted, and he was eating lunch and complaining about the food. Some things never changed.

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

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

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

ouchCross4Dad was returned to his room at 12:15 P.M., and a couple of minutes later, we were told that he was still scheduled for surgery today. Less than 30 minutes later, another transportation tech arrived to take Dad to the OR prep area. Mom and I were both allowed to accompany him. Dad wasn’t in favor of my coming, but I wanted to speak with the anesthesiologist. Dr. Daniel Stahl, the surgeon, stopped by to tell us about the surgery. He said that Dad would need three pins and that unless they found something different from what they had seen on the x-rays, the procedure should take less than two hours.

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

anotherFallCross1When the nurses had finished drawing Dad’s blood, Mom and I made our way to the OR waiting room. After waiting for about an hour in the freezing-cold room, we were pleasantly surprised to see Tom, my parents’ pastor. I don’t know how he found us, but pastors seem to know their way around hospitals. We had a nice visit with him, and during our discussion, I mentioned my concern about Dad’s reluctance to go to rehab. I hoped that Pastor Tom would be able to have a guy-to-guy talk with Dad sometime before he was discharged from the hospital. After talking with Mom, I learned that part of her reluctance to send Dad to rehab was because of the promise that my parents had made years ago to not put the other in a nursing home. I explained to her that he would be admitted to the temporary resident section of the skilled nursing facility, not the permanent resident section, commonly referred to as a nursing home. I think that she felt somewhat better about rehab after our discussion.

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

Oh, joy.

 

Life without the PEG

April 19, 2016. In the days following the removal of Dad’s PEG, a sense of normalcy seemed to descend on my parents’ home. Dad still had dialysis sessions on Tuesdays, Thursdays, and Saturdays, but we no longer had to deal with the PEG tube and the stoma, and Dad could get rid of his undershirts that we had customized to accommodate the tubing. Only the dialysis catheter still remained, and it would stay in place until the fistula was cured and ready for dialysis.

sansCross1The amount of fluid that was removed from Dad during dialysis seemed to fluctuate widely. On one day, they would remove 2,200 ml, and two days later they would remove only 1,200 ml of fluid, which was the minimum level. It was hard to believe that fluid retention could vary by a liter. We tried to ensure that Dad adhered to his renal diet and couldn’t understand the fluctuations.

I traveled back to Houston for a few days and was astonished by the high water that I saw on the drive home. The Little River, which is often barely more than a trickle, looked like a boiling ocean and extended the entire width of the bridge. I had often wondered why the bridge over this pissant river was almost a mile long, and now I knew. The Brazos River was shockingly high as well. The news about the rain had made the national news, but this drive home gave me a first-hand glimpse of its aftermath. I had heard that a portion of US290 had been damaged during the flood, so I exited to FM99, only to be turned back because the road was underwater. Fortunately, the damage to US290 affected only one lane, so the slowdown was minimal. I suspected that I would start seeing some flooded neighborhoods as I approached Houston.

sansCross2In 2004, my parents designed their current Temple home and contracted with Mike, the builder who had built their previous home, to turn their plans into reality. Several months before Dad entered the hospital in May 2015, the foundation cracked, causing cracks in the walls and the tile floors. A couple of weeks before Dad’s surgery, Mike repaired the foundation (at no cost to my parents). Mike had planned to let Dad contract his crew to repair the cracked drywall and tile when Dad returned from the hospital. Those plans were put on hold when Dad was discharged from the 148-day hospital stay to almost five months of home care. Not only would the work have been very disruptive, but Dad had a tracheostomy and could not be exposed to the fine dust from the tile work and drywall. Now, some 11 months later, the tradesmen had arrived and the final repair work was about to begin.

April 20. Today was my first day in the Houston office for the first time in a few weeks. On earlier trips to Houston, I had worked from my home office. It was nice to be back among my coworkers, some of whom I hadn’t seen in almost a year.

At 10:45 A.M., I received a text message from Sue, the dialysis nurse practitioner. I had contacted her earlier because Dad had been experiencing some irregularity, and I now never purchased any OTC medications without first asking her if they were safe for renal patients. In this instance, she told me that Dr. Issac, the nephrologist, recommended that Dad take Miralax. I passed along this message to Mom, and she said that she would have him start taking it.

2014_ 08temple_113Mom and Dad worked in the garden, and Dad decided to do some work on their irrigation system. After getting down on the ground, he couldn’t get up. Mom wasn’t strong enough to help him up, so she had him crawl over to the greenhouse steps, and from there he was able to sit and then stand up. I had no qualms about him getting on the ground to work in the garden, but it was important to have (stable) aids nearby that he could use to get back on his feet. Fortunately, their garden shed was next to the garden. He could also have crawled to the chairs on the patio, but he might have encountered some chiggers and fire ants on the way. Stan had seen a wagon in a gardening magazine that might be helpful to Dad, but we were fairly certain that Dad would not want us to order it.

Dad had a physical therapy session with Brenda today, but their session was cut short because of the pain in Dad’s back. Before she left, Brenda provided Dad with a list of exercises that she wanted him to perform before their next session. Dad wasn’t known for exercising between sessions, and I doubted whether he would do them.

April 21. It was another rainy day in Houston and Temple. We didn’t need the rain in Houston, and I didn’t like Mom driving Dad to dialysis in the rain. During dialysis, Dad had 1,200 ml of fluid removed.

sansCross3When I spoke with Mom, she said that Dad had gotten up on the riding mower and spent about 15 minutes mowing the backyard. Many years earlier, Dad had had some terrible back problems, and a doctor (probably a surgeon) had recommended back surgery. Like me, my father had a career that required you to sit all day, which is terrible for your back. After my parents retired to a farm in Colorado, he spent a lot of time working outside and riding his tractor, and he swore that the tractor fixed his back. I assumed that he was looking to his riding mower for similar relief.

April 22. Stan and I had planned to spend the weekend in Temple but decided to go a day early instead of our usual Saturday. I worked for about seven hours, and he did some chores around the house before we left for Temple in two cars. Stan left around 1:45 P.M. and I followed him about 15 minutes later, but I arrived about 15 minutes before him. Although I might have a tiny bit of a heavy foot, he made two stops along the way to my one stop.

The weather was fabulous in Temple, so we enjoyed our happy hour drinks on the patio. Because today was Friday, we had tacos for dinner. Stan and I often teased my parents about their mealtime conventions. You could always tell what day it was by the breakfast and dinner menus. After dinner, we played Oh Hell, and I won, which broke my current losing streak.

April 23. Dad often complained about having to get up at 4:45 A.M. to get to dialysis, but he almost always woke up earlier, and this morning was no exception. According to my mother, he was awake and out of bed at 4:00 A.M. He went back to bed at 4:30 A.M. and she then had to wake him at 4:45 A.M.

IMG_1747Stan and I took my car to a local garage for an oil change, and then we drove to the nearby town of Buckholts for a short photo safari. During my many trips to and from Temple, I had passed an old abandoned house that I wanted to photograph, but I had never had the time to stop. The weather was still nice and we were able to spend some time away from the house. On our way back to my parents’ home, Stan stopped in Rogers and purchased some doughnuts. He said that the doughnuts were for Mom, but I think that he used her as an excuse to buy them for himself.

After lunch, Dad and I started preparing a stew for tonight’s dinner. He had purchased the vegetables, so the stew was chock full of vegetables that we didn’t see when Mom shopped. While the stew simmered, I had Dad take an hour nap. Mom and Stan were slaving in the backyard. Mom worked in her garden and the courtyard and Stan mowed the lawn, trimmed some bushes, and treated fire ant hills.

sansCross3Both my parents made two disturbing statements today. Mom said that “it was a shame that my father had to end his life this way,” and Dad said that “it’s too bad that you have to have dialysis just to live.” I guess my perspective differed from my parents’. I was thrilled that he was here and that we were still able to have fun as a family. We’re the perfect example of viewing the glass as either half empty or half full.

April 24. I slept until I was awakened by the rising sun shining on my face. My room didn’t have curtains, but I rarely slept until sunrise. I finally got out of bed shortly before 7:00 A.M. and changed into my scrubs, which had become my new go-to early-morning clothes. Mom was downstairs, and I heard the familiar tone from the coffee maker that indicated that my coffee had finished brewing.

While Mom and I attended church, the guys were outside in the garden, spraying and doing a variety of miscellaneous yard maintenance chores. After lunch, the guys went back outside to do more spraying, and then they came inside to watch a golf tournament. Stan helped me put away some of the Christmas decorations that had been sitting on the floor in the storage room.  Stan left shortly after 5:00 P.M. and arrived home around 8:00 P.M.

sansCross2Mom, Dad, and I had drinks out on the patio, and Dad and I cooked hot dogs on the grill. For the first time in longer than I can recall, we watched TV after dinner instead of playing cards.

April 25. I had been working for about 45 minutes when I heard Dad’s wheelchair pass by the office en route to the kitchen. When I reminded him that he had four days a week that he could sleep in, he gave me a look of mock surprise. He liked to complain about having to wake up early for dialysis, but he also woke up early on his off days. I followed him into the kitchen to refill my coffee cup and heated him some water while I was there. A few minutes after finishing his coffee, I heard him return to the bedroom and get back into bed.

Mom woke up at 6:30 A.M. and stopped by the office to say good morning and tell me that Dad was still sleeping. He eventually woke up again around 7:00 A.M., which was when I went to the kitchen for breakfast.

sansCross1I was glad that we didn’t have any planned meetings today with home-care health providers. Shortly after 9:00 A.M., Russell and his assistant arrived and started repairing broken tile. They worked until 3:00 P.M., which was when I also quit working for the day so that I could accompany Mom and Dad to the doctor’s office.

Dad’s PCP worked Tuesday through Friday, and not always from the Temple office, and it was difficult to see her within a reasonable amount of time. When I had asked our friend Sue if she could recommend another PCP for Dad, she had recommended Dr. Michael Martin. Dad met with him today for about 20 minutes. The doctor ordered some x-rays and bloodwork, and then we scheduled a follow-up appointment. On the drive home, we all agreed that we liked this doctor. In light of the decision to switch PCPs, Mom said that she would cancel Dad’s appointment with Sarla Patil on Wednesday, two days from now.

sansCross2On the way home, we stopped by Walgreens to purchase birthday cards for a niece, nephew, and grandniece. Since becoming the last Locke of his generation in October of 2008, Dad had been keeping in touch with the children and grandchildren of his siblings. During his medical ordeal of the past year, Dad had maintained this correspondence, being unable to sign only one card, which Mom signed on his behalf.

Photo by Marcus Dall Col on Unsplash

 

More milestones on the road to recovery

milestoneCross2February 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.

milestoneCross1While 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.

milestoneCross3When 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.

milestoneCross2About 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.

milestoneCross1I 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.

milestoneCross3I 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.

milestoneCross1Instead 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!

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.

decan_cross2At 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.

decan_cross3Shortly 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.

decannulationAt 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!

decan_cross1We 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.

decan_cross3February 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.

decan_cross3After 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.

decan_cross2February 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.

decan_cross3After 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.

decan_cross3When 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.

decan_cross1Now 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

redcap21_smallFebruary 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.

normalcyCross1Dad 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.

normalcyCross3We 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.

normalcyCross2At 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.

normalcyCross4While 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 60th 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.

normalcyCross1A 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.

pamCakeI 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.

normalcyCross4The 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.

normalcyCross2We 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.

They said that this anniversary wouldn’t happen

January 30, 2016.  Because it was Saturday, Michell and Dad were awake at 4:00 A.M., and within the next 50 minutes Dad had had his usual breakfast of Cream of Wheat, had dressed himself, and he was ready and waiting for the HOP bus to take them to dialysis. During his dialysis session, 1200 ml fluid was removed, which was the minimum amount that they could remove.

In Houston, I slept in until the sinfully late hour of 7:00 A.M.  I took care of a few errands and was on the road to Temple by 11:30 A.M. Shortly after I drove from I610 to US290, Dad and Michell arrived back home. They enjoyed grilled cheese sandwiches, and at 1:30 P.M., Dad was ready to lie down for a nap.

anniversaryCross3Michell learned yesterday that her mother was in the hospital and would most likely require surgery to remove her gallbladder. She immediately contacted Becky, the owner of One On One Personal Home Care Services to notify her that she wanted to leave Saturday (today), three days before the end of her shift. Had I been in her shoes, I would have left in a heartbeat, but the selfish side of me hoped that her mother would recover quickly and not require post-op care from Michell. Becky called my mother and told her that Joanie would be replacing Michell. Joanie was traveling from Palestine, Texas, about a 2-1/2 hour drive from my parents’ home. Michell said that she would stay until Joanie arrived so that she could orient her. I was crossing my fingers that we’d see Michell again.

Because we anticipated a late arrival from Joanie, Michell joined us for dinner. Joanie was an experienced aide, and Michell was able to complete the orientation within 30 minutes and was driving away by 8:00 P.M. By the time that Joanie and I got Dad to bed, it was after 9:00 P.M. Dad had made it through the day without any vomiting. I was cautiously optimistic that he was getting better. By the time that I got upstairs and finished my call with Stan, it was 10:00 P.M.

January 31. At 4:30 A.M., I was awakened by the nerve-grating alarm on the Kangaroo pump. Joanie had added more Nepro to the tube feed bag, but the pump couldn’t move the fluid. Every so often, an air gap appeared in the line and we had to prime the pump, which was the case now. I showed Joanie how to prime it, but I didn’t expect her to encounter the problem again. I returned to bed and slept fitfully for another hour until I heard Dad waking up.

With a little assistance from Joanie, Dad got up and dressed, and wheeled himself into the kitchen to visit with Mom. The four of us ate eggs and homemade English muffins for breakfast. When we finished breakfast, Dad wheeled himself back to his room, and I gave him his morning meds and administered his trach care. Mom and I left for church at 10:20 A.M., and Dad took a nap while we were gone.

blueberryNewtonDad was awake and feeling well when we returned from church at 1:00 P.M., and he ate a couple of slices of turkey and two Blueberry Newtons for lunch. I don’t know what had possessed Mom to buy the Blueberry Netwons; they’re not nearly as good as the original Fig Newtons. I love blueberries, but these cookies had a strong taste of artificial flavoring.

After lunch, Dad used the walker to walk around the yard with Joanie. Within 15 minutes he came back indoors, saying that he felt nauseous, and then started vomiting mucus. I found it interesting that within two hours of eating, he would vomit mucus and not his lunch.

anniversaryCross2He started feeling better and then went outside and sat on the patio for about 30 minutes. My parents’ 67th wedding anniversary was in a couple of days and I needed to go to the store to get them a card. There are no special gifts for 67 years, but this anniversary seemed especially special. Fewer than 150 days ago, we were told that this anniversary would never come. Hallmark didn’t have any “thank goodness you survived” anniversary cards. Walgreens was the perfect place to buy a greeting card. Not only could you buy a card, but you could also pick up a bottle of wine. When I left Walgreens with my card and wine, I stopped by the Scott & White Pharmacy to pick up a couple of prescription refills for Dad.

A dear friend of mine was experiencing some angst with the medical industry. Her father had had some surgery during the past summer, and at least one of the medical professionals had made some bonehead mistakes that had impacted her father’s recovery. We chatted on the phone and compared war stories. We could write a book.

anniversaryCross2To get some carbs and protein into Dad, I prepared a salmon and pasta salad for dinner. While Dad had been in the hospital, keeping ourselves nourished was a challenge. I often prepared multiple casseroles on the weekends and froze them. Consequently, I could now fix a mean pasta casserole with lots of vegetables and protein. I also loved casseroles because they provided at least one night of leftovers.

Instead of teaching Joanie how to play Oh Hell, I thought that it would be a nice change to play Yahtzee, and Mom won. By 7:30 P.M., we were starting Dad’s nighttime routine. He had reached the point where he could practically guide Joanie through the routine. By 8:00 P.M., he was falling asleep.

February 1. Today marked the 125th day since Dad’s discharge from the Scott & White Continuing Care Hospital. When I woke up at my usual time, I thought that I heard some unusual sounds coming from Dad’s room. I lived in fear that something dreadful would happen to him during the night, a fear that had started during his hospitalization. I got out of bed and went downstairs to Dad’s room to check on him. I was relieved to see that he was just sleeping, and I went back upstairs to dress and get ready to work.

By 5:00 A.M., Dad and Joanie were awake. With little assistance from Joanie, Dad got dressed and then wheeled himself into the kitchen for his breakfast of Cream of Wheat and figs.

anniversaryCross3I spent most of the morning working with the office door closed. Shortly before 10:00 A.M., I heard Mom and Dad talking with someone who didn’t sound like Joanie, but the voice sounded somewhat familiar. When I opened the door, I heard the unmistakable voice of Dianne. Joanie was scheduled to return to a client’s home tomorrow and needed to return home today. Evidently, Becky had texted Dianne and had asked her if she would return a couple of days early and stay with us for nine days instead of seven. Dianne sometimes grated on my nerves, but I was glad (practically thrilled) to see her again. I hadn’t realized how much she simplified my life.

About an hour later, Brenda arrived for Dad’s physical therapy session, and she really put him through the paces. Dad’s goal for this 30-day period was to walk with a cane, and she was doling out the balance exercises in earnest. Usually, she wanted us to work with Dad on some of the exercises between sessions, but today she told us that he should only do these exercises when she was present. Before she left, she had him lie on the bed and do some of his bed exercises to improve his core muscles.

anniversaryCross2When Brenda left at noon, I took a lunch break, and the four of us enjoyed some leftover meatloaf. Shortly after lunch, Dad was ready for a little nap, which is all he got. He had been sleeping for about 20 minutes when the doorbell rang. We all assumed that it was Kristen, but it was just a delivery of medical supplies. Dad dozed for another 20 minutes before Kristen arrived for his swallow therapy session. Once again, she restated that Dad must guard his airway and that he should exercise between sessions. I was pretty certain that the therapists felt like they were whistling in the wind when they provided guidance about behavior and exercise. Fortunately, Dad improved in spite of himself. If he had exercised during the time that it took to come up with the excuses for not exercising, he would have been the Richard Simmons of home care.

After Kristen left, Dad and Dianne walked around outside, and Mom and I ran a couple of errands.

During happy hour, we watched the news. After dinner, we played Oh Hell, and I won. The Iowa caucus was tonight, and when I went to bed, Cruz, Trump, Rubio, and Carson (in that order) were leading the pack.

anniversaryCross1February 2.  It was dialysis day, so we were all up early. Because it was their anniversary, Mom gave Dad some extra figs with his Cream of Wheat. Dad and Dianne were ready and on the HOP bus by 5:45 A.M. During dialysis, 1200 ml of fluid was removed, and he was finished with dialysis by 10:30 A.M. Unfortunately, the bus didn’t pick him up from the dialysis center until 12:30 P.M. He and Dianne were pretty steamed about the delay.

We had lunch around 1:00 P.M. and I got on Dad’s case twice for not swallowing correctly. He got mad at me for yelling at him. I just could not make him understand how important it was for him to concentrate on swallowing. Kristen had also been adamant that Dad not talk while eating, but it seemed that he never stopped talking. I was usually wound up pretty tight during meals.

At 2:00 P.M. he took a nap and slept for a couple of hours. He had wanted to go outside, but somehow he and Dianne never made it outside. Dianne had talked about having him work on his bed exercises, but that didn’t happen either.

anniversaryCross1In addition to watching the news during happy hour, we acknowledged my parents’ 67th wedding anniversary. Mom and I had been able to purchase cards, but Dad’s road trips were still very limited. Dad loves salmon, and Mom fixed us a nice salmon and broccoli dinner for their anniversary.

After dinner, we played Oh Hell and Dad won—our anniversary gift to him. By 7:30 P.M., the festivities were over, and we started Dad’s nighttime routine. By 8:15 P.M., he was asleep.

February 3. Because Dad had complained that the Nepro made him feel too full to eat during the day, Dianne and I decided to administer his prescribed three cans during the night. The tube-feed bag held only two cans of Nepro, which meant that Dianne would need to refill it sometime around 2:00 A.M. On most nights, like last night, she was successful in keeping the tube-feed bag full. For the most part, Dad liked this arrangement.

anniversaryCross2We had an early appointment with Dr. Pfanner and the tube feed team (Julie and Talitha) and had made arrangements with the HOP to be picked up at 7:15 A.M. Dianne and Dad rode in the bus, and Mom and I followed in my car. As we were walking into the clinic lobby, Dad felt sick and vomited into a trash receptacle. Thank goodness we were on our way to see the gastroenterologist. I hoped that he could shed some light on the cause of Dad’s vomiting.

Talitha and Julie both had medical students in tow, so the small exam room was very crowded. During this visit, Dad would have his PEG changed. To ensure that you don’t encounter problems with it deflating and falling out, a PEG should be changed every couple of months. Talitha and Tiffany, her student, changed out Dad’s PEG. Dr. Pfanner was extremely pleased with Dad’s progress and said that by all rights, he should be dead and that 90% of the cases like Dad’s don’t end well. I hoped that Dad would hear what the doctor was saying and understand just how serious his condition was and how tenuous his situation was. Instead, all that he heard was how well he was doing and how well he looked. Unfortunately, no one could offer any insight into the intermittent vomiting.

The doctor wanted to see us again in another month, and we tried to make an appointment for March 2nd on our way out, but that day was not available. I would have to call them later when I had Dad’s calendar handy.

anniversaryCross3We got back home around 9:45 A.M. Mondays were usually busy, and today was no exception. We ate an early lunch and Dad helped himself to some leftover salmon and an English muffin.

Brenda arrived shortly after noon for Dad’s physical therapy session, and she gave him a real workout. He was able to rest for an hour before Kristen arrived for Dad’s swallow therapy session.

As she had told us during her last visit, she had Dad eat one of Mom’s pumpkin cookies with some water, which was the first time in almost a year that he had eaten a solid with a thin liquid. The test seemed to go well, and Kristen reminded him about the importance of protecting his airway. As she was leaving, Kristen told me that she had four more sessions with Dad, so February 17 would be her last day. To accommodate some other plans that I had for that day, I asked if she could make it the 19th, and she agreed.

Shortly after 4:00 P.M., I changed out Dad’s trach for what I hoped would be the last time. During Dad’s appointment with the pulmonologist on January 4, the doctor had contemplated removing Dad’s trach, so I was hopefully optimistic that he would be decannulated during his upcoming appointment. Today, the removed trach looked much better than it did the last time, and Dad’s stoma was much smaller. Even Dianne commented about the smaller diameter of the stoma. Dad didn’t cough very much after the changout, which was a nice change. The smaller trach tube enabled Dad to more easily handle his secretions, which might have contributed to the improved appearance of the trach.

After happy hour, we ate leftover casserole for dinner followed by Mom’s fabulous homemade lemon meringue pie.

By 7:30 P.M., Dad had walloped us at Oh Hell and was on his way to bed.