More milestones and fewer nets

February 18, 2016.  I knew that Dad had had a very restless night. Because his bed constantly creaked while he fidgeted, I hadn’t had much sleep either. When he woke up at 4:00 A.M., he said that he hadn’t slept much, and I had a pretty good idea why. Today’s trip to dialysis would be different from any other trip because not only would he not have an aide to accompany him, he wouldn’t have an aide stay with him. In addition, Mom would drive him to and from dialysis. I had also spent a few worried minutes awake because I was concerned that he would try to get out of bed. I didn’t realize it at the time, but at 3:15 A.M., he did get out of bed by himself and got into the wheelchair.

net2BirdShortly after hearing the wheelchair, I got up, dressed in my scrubs, and logged on to work. It was then that I noticed that Mom was still sleeping and had not helped Dad out of bed. Mom woke up shortly before 4:00 A.M. It was a semi-hectic morning on our first dialysis day without an aide, but Mom and Dad were on their way to the dialysis center in plenty of time for Dad’s 7:00 A.M. appointment.

After Mom returned home, she and I ate breakfast and then she started baking a batch of English muffins. Unfortunately for her, she miscalculated how long the baking would take, and she realized too late that she would not get to the dialysis center at my parents’ agreed-upon time. As she feared, she arrived a few minutes late.  Dad was royally annoyed, and he complained ad nauseam about her tardiness. He finally dropped the subject and said that they would have to adjust their schedule. During dialysis, only 1,400 ml of fluid was removed, which seemed low to me. Dad still had a bad congestion, which made me nervous about his fluid levels. I told him that I planned to take him to dialysis this coming Saturday.

net2NetDuring lunch, Dad started backpedaling on his agreement to drink Nepro with his lunch. If he didn’t consume enough calories during the day, he’d have to consume them during the night while he slept. His excuse for not drinking the Nepro today was an upset stomach. After lunch, he took a nap and slept for about 90 minutes. Mom was also tired and fell asleep while sitting in a glider chair in front of the television. I think that they both got some of their best sleep while sitting in front of the television.

When she woke from her nap, Mom called the furniture store and ordered their new bed and scheduled it to be delivered next Friday, eight days from today. My parents had shopped at three stores and had finally settled on a split king-sized bed from Ashley Furniture. Because Dad was supposed to sleep at a 30% incline, they needed a bed that enabled him to sleep on an incline while she slept flat. Before the bed arrived, we’d have to get rid of the hospital bed and move her twin bed back to the guest room.

I stopped work in time for our happy hour and gave Dad some Tussin to help ease his congestion. Although his congestion sounded bad, his temperature, oxygen saturation, and heart rate were all good. We had a relatively light dinner of leftovers and sorbet. Although three-handed Oh Hell isn’t as much fun as when we have more players, Dad wanted to play, and I won.

net2KnotAfter the card game, we headed to the bedroom. While Mom prepared Dad’s night time meds, I gave Dad another breathing treatment. We finally got our first aide-less day under our belts by 8:30 P.M. Whew!

February 19. The day started with a knock-down drag-out argument between Dad and me. We argued over his nutritional needs, Nepro, and the amount of fluid to be removed during dialysis. When Mom left the house in tears, Dad and I sat down and had a rational discussion. He didn’t understand dialysis or his body and only partially heard what was said around him. We finally agreed that when I took him to dialysis tomorrow, I would talk to the nurse about how much fluid to remove.

net2BirdBrenda arrived at 9:30 A.M. for Dad’s physical therapy session.  She put him through the paces but commented to me that she was frustrated that he didn’t practice any of the exercises between their sessions. She and I both hoped that Kathleen would extend his time in physical therapy during his upcoming evaluation. Although his strength was improving, we felt that he needed more therapy.

At 11:30 P.M., Janet stopped by for Dad’s final occupational therapy session. Unlike the physical therapy exercises, Dad did practice some of these exercises between sessions because Mom liked to do them with him.

After eating lunch, Dad took a short nap before Kristen arrived for her final swallow therapy session with him. He presented her with a list of foods that he wanted to eat and asked her if he could eat them. Most of the items were planted firmly in the NO column, but he kept trying to get her to agree to rice and nuts.

net2NetNow that I knew when my parents’ new bed would arrive, I needed to ensure that we’d be rid of the hospital bed slightly before the arrival of the new bed. I called American HomePatient and left a message with Holly, the branch manager, and told her that we needed to have the bed picked up first thing in the morning on February 26.

During Dad’s plan of care meeting, Dr. Issac said that he would order a referral for Dad to see Dr. Greg Jaffers about fistula surgery. I wanted to get an appointment with the surgeon as soon as possible and texted Sue, the dialysis nurse practitioner, to check on the status of the referral. She replied that Dr. Jaffers’ office would contact us when they received the referral.

net2KnotAfter the therapists left, Mom did some shopping and Dad wrote up an article about the Locke Academic Foundation. My father funds a scholarship for political science students at Colorado Mesa University, and he sent some additional information about the scholarship to Shell, his former employer who matches his funding. While the house seemed to be running with a steady rhythm, I worked until 5:00 P.M., which was when I stopped for our happy hour. Dad was still intent on eating peanuts, so I reminded him that for the time being, to reduce the risk of aspiration, he had to avoid eating nuts. When he said that he didn’t know what aspiration was, I was a little alarmed. I couldn’t understand how we could have come this far without him understanding what aspiration was, that it was a bad thing, and how it had nearly killed him.

We didn’t play cards tonight, and I’d be glad when Stan arrived tomorrow.

February 20. I took Dad to dialysis today. The nurse had suggested that they remove 1,600 ml of fluid, but I told her that I thought that his target dry weight was a bit high. His ankles seemed swollen, and I suggested that 1,800 ml might be a better goal, and she agreed.

net2BirdAfter Dad was settled, I left the dialysis center and promised to return at least 20 minutes before the end of his session. He did fine during dialysis and didn’t cough until I came to pick him up. Stan arrived from Houston about 20 minutes after Dad and I returned home.

To begin preparing for the new bed, Stan and I moved the twin bed that Mom had been sleeping on from the master suite to the guest room. We then moved the inflatable bed from the guest room to the master suite for Mom to use until the new bed arrived. The bed wasn’t comfortable for long periods, but Stan wouldn’t be here next Friday when we had to clear out the master bedroom, and I wanted to take advantage of his brawn while he was here. Moving the beds now would enable Mom and me to more easily clean up the room in advance of the delivery of the new bed. I hoped that the inflatable bed wouldn’t be uncomfortable for Mom and that she would be able to get some sleep during the coming week.

I helped Mom set up Dad’s meds for the next two weeks, and the guys played a few hands of cribbage. As long as Stan was here, Dad seemed a bit more laid back.

net2BirdAfter dinner, we played some more cards and monitored the primary election results on the television. In Nevada, Hillary Clinton won the Democratic caucuses and Donald Trump won the South Carolina Republican primary.

When Dad finally went to bed at 9:45 P.M., he said that he was feeling queasy and he was still pretty congested. I was worried that he might not feel well enough to attend church tomorrow.

February 21. I had high expectations for the day. Although we had stayed up a little later than usual, I had been able to sleep for more than seven hours, which was very unusual for me. However, the day seemed to take a turn for the worse when I entered my parents’ bedroom. Dad had a bit of congestion and he seemed to be in a crummy mood. His attitude was such that I fully expected him to back out of attending church again today.

net2NetI was relieved when the four of us got inside the car. I drove to the church and let everyone out close to the church entrance. The accessible parking spots were occupied and the parking lot was surprisingly full, so I had to park quite a distance from the church entrance. I joined my parents and Stan at our regular pew in the church. Soon after we arrived, our church friends who sat in the pew behind us arrived. When I saw Pastor Tom in the sanctuary before the service, I told him that Dad was with us. He stopped by our pew and welcomed Dad in true Tom style. He started the service with a big JOY and announced that after being deathly ill since May, Neal Locke was back. The congregation gave Dad a huge round of applause, and then Tom (jokingly) asked if Dad had brought his offering with him. After the service, many people approached Dad to welcome him back. Before we had left the house for church, Dad had said that he wouldn’t attend church again until he was better. After his warm reception from the congregation, he seemed willing to attend more often. My parents were very fond of this pastor, and before Dad’s hospitalization, my parents had rarely missed a Sunday in church. Getting Dad back to church seemed like another major milestone in his recovery.

net2KnotWhen we got home from church, we spent a lot of time working out the arrangement of my parents’ bedroom. After Stan left, we watched the golf tournament, and I tried to get some work done. We spent most of the evening just talking. Dad’s congestion was practically gone, but he let me give him a breathing treatment before bed. Mom was getting better at administering the meds and tube feeds.

I finally got to bed at 9:10 P.M. After four days without an aide, we seemed to be easing into a routine.


Net photo by Tina Hartung on Unsplash


Not the Valentine’s Day that I had envisioned.

February 11, 2016. Dad had another good night’s sleep. He was awake by 4:00 A.M. and was soon ready for dialysis. Fortunately, he was ahead of schedule because the HOP bus arrived at 5:40 A.M., 20 minutes earlier than our scheduled pickup time. They have a policy that states that if they have to wait on a rider for more than five minutes, they can revoke the rider’s service. This was not the first time that they had arrived 20 minutes earlier than our scheduled pickup time. I can’t count the number of times that he sat outside the house in his wheelchair waiting on them. I think that they had had to wait for him only once.

Dad and Michell returned home from dialysis at 12:30 P.M. Shortly after their return, I started packing up my computer and joined Mom, Dad, and Michell for lunch. I wanted to attend my Thursday night class tonight in Houston, and I departed for Houston after eating.

So far, Dad seemed to be doing well without his trach. I, on the other hand, was as nervous as a long-tailed cat in a room of rocking chairs. On the one hand, the way in which he was improving was just this side of miraculous. On the other hand, I kept waiting for the other shoe to fall. I practically held my breath every time he swallowed, and I just about leaped out of my skin when he talked while he was eating. Kristen had warned him against talking while eating because of the increased risk of aspiration. With the trach gone, all of our backup options were gone. If he aspirated now, he’d be back in the hospital and on a ventilator.

While I was in Houston, Dad’s day was uneventful, which was my idea of a perfect day. After his post-lunch nap, Michell and Mom covered Dad’s dialysis port with layers of dialysis port shields, enabling him to take a shower. Like eating, showering was another daily activity that most of us took for granted but was a potentially lethal activity for Dad.

February 12. Dad slept in until 5:30 A.M., which enabled Mom to get a bit more sleep, too. I had been worried about moving Mom into the room with Dad because she needed her rest and Dad was a fitful sleeper, to say the least. By 6:45 A.M., Dad was eating his typical breakfast of Cream of Wheat and peaches. After breakfast, Michell helped Mom administer Dad’s morning meds.

Shortly before 11:00 A.M., Pastor Don from my parents’ church stopped by to visit with Dad. He hadn’t been by to see Dad recently, and I was sorry that I missed him. I was still in Houston and would not return to Temple until tomorrow.

Don’s visit with Mom and Dad was interrupted by Janet, Dad’s occupational therapist. Her presence also provided Dad with an opportunity to sharpen his wit. He and Janet usually spent the entire session trading good-natured barbs. We were fortunate to have a therapist like Janet. She was good-natured, gave Dad a run for his money, but didn’t take any hooey from him.

Janet departed at lunchtime, and Dad had a good meal of ham and cheese on a homemade English muffin, pickles, nectar, and a Fig Newton. He would need a hearty lunch. Just before 2:00 P.M., he and Mom went bed shopping at Ashley Home Furnishings. They were back home by 3:00 P.M., and Dad was ready for a nap 15 minutes later.

At 5:00 P.M., Dad enjoyed a glass of Sprite during happy hour, which was followed by a dinner of meatballs and avocado salad, and some strawberry sherbet. For Dad, you couldn’t improve much on this meal, unless you substituted salmon for the meatballs. Mom, Dad, and Michell played a game of Oh Hell and were heading to bed by 7:45 P.M.

February 13. Dad was awake at 4:00 A.M. and was eager to get up and get ready for dialysis. Because he was still receiving Nepro during the night, he could not get out of bed until Mom disconnected him from the Kangaroo pump. By 5:00 A.M., Dad was eating his Cream of Wheat, but with pears today. When he finished his breakfast, Mom administered his morning meds. Dad was ready for the HOP bus shortly after breakfast, but today the bus didn’t arrive until 6:15 A.M.

While Dad was in dialysis, Stan and I left Houston for our return trips to Temple. Stan left at 8:30 A.M., and I left two hours later. Dad and Michell returned home from dialysis at 12:25 P.M., and I arrived in Temple just as the four of them were finishing their lunch.

I had barely unloaded my car when Mom and Dad said that they were going to back to Ashley Home Furnishing to look at some more beds.

While Mom and Dad were gone, Michell told Stan and me that she was very concerned about Dad and Mom being alone. She was concerned that we were ending the service with One on One Personal Homecare too soon. Gale had expressed a similar concern. I discussed some options with Michell and asked if she would be able to stay on for the month of March. She wasn’t sure that she could, so we dropped the subject.

Dad had not been embracing our plan to drink Nepro during the day; however, he needed the extra the extra protein that it provided because he was still very underweight. The gastroenterologist was not going to pull the G-tube until we could show that Dad could consume enough calories without it. I also didn’t like Mom waking up at 2:00 A.M. to refill the tube feed bag. I tried giving him ½ can of the Nepro when we administered the nighttime meds. It was a little messy, and he probably didn’t get all of his meds, but it might work. Meanwhile, my 140-pound father kept saying that he didn’t want to get fat.

Dad ate a pretty decent meal tonight of spaghetti and angel food cake, and he won big time at Oh Hell. When I changed his stoma dressing, it looked as though the trach was completely healed and only the neck wound needed to heal. His trach dressing hadn’t been changed since I left town  2-1/2 days ago, but the dressing contained very little drainage. Amazing.

February 14. I had been eagerly anticipating this day for weeks. Today the four of us—Mom, Dad, Stan, and I—were going to attend church together, and this would be the first social outing for Dad since he entered the hospital nine months ago. All of the pastors and some of the church members had been very supportive during the past few months, and getting Dad back to church would be a significant milestone. Unfortunately, he woke up at 7:30 A.M. with a terrible congestion. Stan also told me that he had heard Dad coughing during the night and using the Yankauer suction wand. I didn’t want to verbalize my fears that the congestion might have been caused by aspiration.

I quickly administered a breathing treatment to help break up his congestion, but he was just too sick to go to church. He balked about eating breakfast at first but acquiesced when he saw that Mom had prepared eggs, sausage, homemade English muffins, and her Christmas morning bread. This spread wasn’t typical of our Sunday-morning fare, but this was supposed to be a special day. Before Dad left the table, he had managed to eat his fair share of everything.

I was very disappointed that he didn’t attend church with Mom and me, and had to extend his regrets to some of our friends at the church. When Mom and I returned home, Dad and Stan were playing cribbage. I gave Dad two more breathing treatments during the day and gave myself one in an attempt to deal with my developing congestion. Shortly after we had finished eating lunch, Stan departed for Houston.

During the afternoon, my parents watched a golf tournament, although they seemed to sleep through most of it. They woke up shortly before 5:00 P.M., and we had a nice happy hour. Dad nibbled at his dinner of a frankfurter, tomato, and avocado salad. After eating a slice of angel food cake, he was ready for a game of Oh Hell, which I won.

By 8:00 P.M., Dad was on his way to bed. Before Mom administered his meds and set up the Nepro and Kangaroo pump, I administered another breathing treatment. By 8:30 P.M., Dad was drifting off to sleep, but I feared that he wouldn’t get a good night’s rest.

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

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

netCross1Unfortunately, finishing dialysis early doesn’t necessarily mean that you can leave early. Dianne and Dad had a bit of a wait for a bus that would take them back home. When they arrived home at 11:30 A.M., Dad wasn’t feeling very well and wanted to take a nap. We had a quick lunch so that he could start his nap at 12:15 P.M.

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

netCross2We had been anticipating the arrival of a nurse to reevaluate Dad for another 60 days of skilled nursing. A nurse that we had not met before arrived at 2:00 P.M. for the recertification visit. Instead of being approved for the additional time, she said that Dad was too healthy and that she would not recommend further skilled nursing support. Instead, we would be permitted three calls to the Home Care office during the next 60 days. I suddenly felt like I was dancing on a tightrope and my safety net had just been removed.

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

IMG_1456When the news was over, Mom noticed that the bleeding had restarted. After careful examination, it seemed that additional swelling had caused little cuts to open and bleed. I used one of my three lifeline calls to Leo, the after-hours nurse. He encouraged us to take Dad to the emergency room to ensure that he was OK. I had often said that I would never take Dad back to the Scott & White emergency room unless he was bleeding profusely, so I guess that this situation qualified as ER-worthy.

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

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

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

netCross3January 27.  Dad had a restless night’s sleep, but he and Dianne slept in until almost 7:00 A.M. I didn’t have any early morning meetings and was able to sleep in until 4:45 A.M. It wasn’t close to a full night’s sleep, but after our late night at the ER, it was better than getting up at my usual 3:30 A.M.

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

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

netCross2While Dad was in the hospital, the lock on our front door had quit working. With a little assistance from Michell, Dad switched the front-door lock with one that was never used. After six months of not having access to the house from the front door when it was locked, it was nice to have it working again.

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

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

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

netCross1We were able to enjoy dinner and a game of cards tonight without any interruptions from vomiting. Dad was on his game tonight and beat us at cards. By 7:30 P.M., we had finished our card game and were starting our nighttime routine.

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

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

netCross2While I was driving home to Houston today, Dad took a nap to recover from his dialysis session. After he woke up, he and Michell went to the garage with Mom to check out a problem that she was having with her car.

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

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

netCross3Back in Temple, Dad was having a mixed day. Shortly after he woke up at 5:00 A.M., he started vomiting again. He rested a bit and took his time getting dressed. By 6:30 A.M., he was feeling up to eating his usual breakfast of Cream of Wheat and peaches. Michell had waited until after he ate breakfast to administer his morning meds and trach care. When she was finished with his morning routine, she resumed the tube feed at the slower 50 ml/hour rate.

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

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

netCross3After Janet left, Dad had a light lunch of ham and cheese and a cup of nectar. Michell was able to get him to practice some of his balance exercises at the sink, and then they walked outside for a few minutes. He then spent the remainder of the afternoon napping.

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


Improving at a snail’s pace with speed bumps

January 22, 2016. Today started out well. I started to work at 3:45 A.M. and stopped about three hours later for a breakfast break. I was surprised to learn that Dad was still sleeping. A few minutes after I returned to work, I heard Dad and Dianne talking in the bedroom. After she unplugged him from the tube feed, he used the walker to go into the closet to pick out his clothes for the day, and then he got dressed. Dianne later told me that it was a blessing to witness how far he had come.

scargo_cross1Dad, Dianne, and Mom ate breakfast at 8:15 A.M., Dad having his usual Cream of Wheat with honey, and a pear. About 90 minutes later, he said that he didn’t feel well, and then started vomiting. Surprisingly, he vomited only mucus and not his breakfast. I was perplexed about what might have caused the vomiting. Fortunately, Stephanie, the nurse, had already called us and was scheduled to arrive within the hour.

When Stephanie arrived, she couldn’t shed any light on why he might have been sick. She said that although he seemed to have a lot of phlegm, his lungs sounded clear. She and I then had a long talk about the amount of fluid that was being removed from him during dialysis. He didn’t appear to be retaining any fluid, and his dry weight seemed low to me. Stephanie was no nephrologist, but I asked her if she thought that measuring Dad’s ankles every day might help us to determine his level of fluid retention. She said that she thought that that was a good idea and suggested that we give it a try.

Janet stopped by for Dad’s occupational therapy session, and she and Dad had a long discussion about his lack of exercise between their sessions. He didn’t like to do it, and I doubted that anything she said would make any difference. She said that she would return next week, but I didn’t know how much more we’d see of her after that. She had been working with Dad on building up his core, and today I was pleased when I learned that she would lead both Mom and Dad through the exercises. I had Dianne record the session so that they could repeat the exercises when Janet wasn’t here.

IMG_1437When Janet left, I took a break from work to eat lunch. When I returned to my computer about an hour later, I was greeted by the blue screen of death. I called my employer’s help desk and ran through some diagnostic tests to determine if we could fix the problem, but the tech finally said that he would open an urgent issue. I was lucky. The now-dead computer was very new, and I still had my old laptop with me. The IT tech from the Houston office called me and said that he was sending me a loaner computer via FedEx, which meant that I wouldn’t need to drive 60 miles to our Austin office, which had been a concern. I spent the remainder of my workday using my old computer to work on a website. I was thankful that I had enabled daily backups of my computer.

While I was playing with blue screens and the help desk, Dianne and Dad were walking around the house and running through his balancing routines at the laundry room sink. During happy hour, he navigated himself into the sunken sunroom. He still needed some assistance to step out of the room, but his skill with the walker was improving.

scargo_cross2We were finished with our dinner of enchiladas and chocolate cake before 7:00 P.M. Dianne was getting better at Oh Hell and was tonight’s winner. We were finished with our card game by 7:30 P.M., and by 7:55 P.M. Dad was drifting off to sleep.

January 23. Although it was Saturday morning, I woke up shortly after 3:00 A.M. While I was lying in bed wondering why I was awake, I heard a loud crash through the baby monitor. I jumped out of bed and ran downstairs and into Dad’s room. It seemed that he had swung he feet out of bed and was attempting to get out of bed, forgetting that he was attached to the tube feed, which hung on an IV pole. Having the contraption fall was only a small problem. The fact that Dianne had not secured the top of the tube-feed bag when she refilled it was quite another. The sticky Nepro seemed to have been sprayed all over Dad, his bed, and the floor. Once again, I was very thankful that Stan had purchased floor mats to cover my parents’ bedroom carpeting.

While Dianne was cleaning up after Dad’s handiwork, Dad wheeled himself into the bathroom and got himself cleaned up for breakfast. After his breakfast of Cream of Wheat, he wanted another cup of hot water, which prompted another knock-down drag-out about what he could and could not do with water. Kristen, the speech therapist, had told him on numerous occasions that he could not drink water unless his mouth was clean. Drinking water immediately after eating was strictly forbidden—at least for now. I reminded him that by March 1st I would be out of here, even if he gave himself pneumonia again by aspirating on food particles.

scargo_cross3Mom and I were still concerned about Dad’s dry weight and followed his bus to the dialysis center so that we could talk with his nurse about the amount of fluid they had been removing. We had spoken with Sue, our friend and nurse practitioner, only a week ago, but I still thought that they were removing too much. After speaking with the charge nurse, she said that they would remove only the minimal amount—1200 ml. Mom and I had been loaded for bear, and the encounter with the nurse was very anticlimactic.

On the way home from the dialysis center, Mom and I stopped at HEB. I preferred shopping during early morning hours when no one was around except the people who restocked the shelves. When we pulled into the parking lot, we noticed the strangest sight—hundreds of blackbirds were sleeping in the parking lot. Dozens of them were on the ground, and many others were sitting on the tops of the employees’ cars. As we drove through the parking lot, they didn’t stir. They remained still as we walked passed them and into the store. By the time that we left the store, the birds were gone.

Stan arrived from Houston at noon. He hadn’t been in the house for more than two minutes where we heard the HOP bus arrive with Dad and Dianne. Dianne reported that Dad had weighed in at 66.2 kg, and true to her word, the nurse had removed only 1190 ml of fluid, leaving Dad weighing 65.4 kg.

scargo_cross2After lunch, Mom and I ran a couple of errands, and when we returned, Stan and Dad were playing cribbage. After beating Stan at a couple of games, Dad finally wanted to take a nap. He told Dianne that he wanted to get up by 5:00 P.M., a little less than two hours from now. She tried to wake him at 4:45 P.M. and then again 45 minutes later. She was finally able to rouse him at 5:50 P.M., but he stated that he didn’t feel right.  He joined us in the living room as we were ending our happy hour. Dianne prepared some shaved ice for him, and during the remainder of our happy hour, Dad talked a lot about his mother and her final days battling Guillan Barre Syndrome.

We had a nice dinner, but Dad didn’t eat much. At Dad’s request, we played a longer game of Oh Hell and didn’t start heading toward bed until 8:45 P.M. After Dad got into bed, Dianne left the room to get ready for bed. She was gone for only a couple of minutes when Dad started complaining about not feeling well and about having the G-tube. As I was administering his meds into the G-tube, he started vomiting, and this time he was vomiting a lot more than mucus.

By the time that Dianne returned, Dad said that he was feeling better. To ensure that his night was less eventful, I also administered some Zofran into his G-tube. He seemed to be coughing a lot, so we had him move up in the bed, and I raised his head and feet. By 9:30 P.M., he seemed better and ready to go to sleep. I was certainly good and ready to go to bed.

January 24. I got up shortly before 6:30 A.M. and went downstairs to see Dad. I had heard through the monitor that he and Dianne were awake and he was asking her if he was tied up (his reference to being attached to the tube feed). He was feeling good, but he was somewhat grumpy and a little sarcastic. While he and I were exchanging barbs, Dianne left the room to take a shower and get dressed. When she returned, I went to my home office to see if I could make any progress with my loaner PC, which had arrived yesterday from my Houston office.

IMG_1442We all had a nice breakfast together. Mom fixed scrambled eggs, sausage, and English muffins, and Dad had a little of each. While Mom and I attended church, Stan and Dad played cribbage. After lunch, Stan and Dad went out to the garden. They spent about 30 minutes outside and then sat on the patio for about 20 minutes, just enjoying the beautiful weather and each other’s company. Stan was Dad’s welcome relief from being surrounded by a bunch of women who seemed to do nothing but tell him what he could and could not do. By the time that the guys came indoors, it was after 3:00 P.M. and time for Stan to return to Houston.

After Stan left, the four of us watched the Denver Broncos beat the New England Patriots. My parents were diehard fans of the Denver Broncos and were thrilled at their victory over the Patriots. We monitored the game between the Carolina Panthers and Phoenix Cardinals during dinner and our game of Oh Hell. Dianne was a fan of the Panthers, so everyone in the house seemed pleased with the outcomes of the sporting events.

scargo_cross1We wrapped up our game of Oh Hell by 8:30 P.M., and by 9:15 P.M., all of were ready for bed. Before drifting off to sleep, I called Stan. He had texted me when he arrived home, but I needed to speak with him every night before I went to sleep.

January 25. I was up by 3:30 A.M. and at work with a cup of hot coffee within 15 minutes. The house was very quiet for the next 2-1/2 hours. I kept the office door closed, but by 6:00 A.M., I heard some sounds coming from Dad’s room.  Dianne unhooked him from the tube feed, and Dad got up and got dressed for the day. He wheeled himself into the kitchen and prepared himself a cup of hot water while Mom prepared his Cream of Wheat and ½ pear for breakfast.

IMG_1446While I was working, Dad and Dianne walked around the backyard for about an hour, which gave his legs a good workout.

Brenda arrived around 11:30 A.M. for Dad’s physical therapy session, and she concentrated on his balance, which would be important when he started walking with a cane.

Kristen arrived at 2:00 P.M. for Dad’s swallow therapy session. During this visit, she had Mom prepare a cup of hot coffee for Dad and had him take some sips of it. Once an avid coffee drinker, he now was not very enamored with the taste of coffee. It’s amazing how not eating for a few months can affect your taste buds. Kristen said that as long as he had a clean mouth and remembered to tuck his chin when he swallowed, she felt good about him drinking coffee. She added that on her next visit they would have thin liquids and a snack. Kristen left after only 30 minutes, at which time Dad decided to take a short nap.

In addition to Dad’s normal Monday activities and appointments, today was recertification and assessment day for Dad’s therapies. At 3:00 P.M., Kathleen arrived with Pam, the physical therapy shower aide, in tow. Kathleen reviewed Dad’s balance, walking with the walker, and his ability to transfer into and out of the car. She also had Pam work with me to ensure that I could properly apply the dressing to Dad’s port before he showered. Our aides were both trained, but their time with us was coming to a close, and Mom and I also needed this training. At the end of her time with us, Kathleen certified Dad for another 30 days of occupational and physical therapy. She said that he had great balance and that she would like to see Dad walking independently with a cane at the end of 30 days.

scargo_cross3After Kathleen and Pam left, I returned to work until happy hour, and Dad took a nap. After dinner and happy hour, Mom beat us at Oh Hell. It was an early evening, and Dad was in bed by 8:00 P.M. I couldn’t wait to call Stan and give him the good news about today’s events.




Getting better doesn’t always feel like progress

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.

progresscross1When 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.

progresscross2Before 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.

progresscross3When 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.

progresscross1We 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.

progresscross2At 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.

jan20Shortly 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.

progresscross3Mom 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.

progresscross2While 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.

progresscross1We 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.


Checking off another milestone: successful car transfer

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

carCross3While Dad was on dialysis, Mom and I attended a Methodist Women’s Epiphany luncheon at the church. I had been attending this church for about a year now and knew many of the women. When Mom and I returned home after the luncheon, Dad was finishing a lunch of a turkey sandwich and ¼ cup of applesauce for dessert. He was like a transformer, transforming from someone who proclaimed that he would only nibble, to our eating machine.

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

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

carCross2Other than a couple of hours during the late afternoon and early evening, today was a good day for Dad. He coughed very little, and I had started his first bolus feed. Bolus feeding would mimic regular meals. To get started with the bolus feeds, we had tried only one can at the rate of 100 ml/hour. He had balked at the thought of doubling his tube-feed rate, but it amounted to only eight ounces over a 2-1/2 hour period. Unless the couple of hours of discomfort this afternoon were due to the bolus feed, he had suffered no adverse effects from it.

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

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

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

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

carCross3Mom and I arrived back home at 12:30 P.M., just in time for lunch. Dad had a blue-tinted tuna-salad sandwich, a bowl of pear slices, and a can of Nepro. After meeting with Susan the other day, I had downloaded a calorie-counting app for my iPhone and was now tracking his calorie intake. Unlike most people, he needed to gain weight, so I kept track of his intake and continually encouraged him to eat more.

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

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

carCross2Still feeling a little unsettled, Dad stayed on the bed until almost 5:00 P.M., and then he joined us in the living room during happy hour. Unsure about what we should feed him, we gave him a cup of shaved ice to see how he could handle it.

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

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

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

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

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

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

carCross1Brenda arrived at 10:45 A.M. for Dad’s physical therapy session and was very pleased with Dad’s progress. She agreed that Dad could try transferring in and out of the car. Getting in and out of a car might seem simple, but this type of transfer is difficult. With an SUV, the transfer into the vehicle is difficult because you have to lift yourself into the vehicle. With a car, the transfer out of the vehicle is difficult because it requires some strength in your legs and core. Everyone was thrilled when Dad successfully transferred in and out of the SUV. Being able to negotiate a car transfer successfully was the first step to freedom from our dependency on public transportation. Because none of us had the strength to manhandle the wheelchair, Dad’s reliance on the HOP’s wheelchair lift would continue as long as he might need a wheelchair on either end of an excursion. Giving up public transportation for the trip to dialysis would require that he was consistently strong enough after dialysis to transfer in and out of cars. Although Dad was not strong enough to start riding in the family car to dialysis and the doctors’ offices, he would soon be able to visit his barber.

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

carCross1Moments after Brenda’s departure, Stephanie, the nurse, stopped by with some much-needed supplies, including covers for Dad’s dialysis catheters and 4×4 gauze sponges. The dialysis covers that I had purchased were too large. We asked her about Dad’s itching and the little bumps on his back. She encouraged us to keep on doing what we were doing, but if the itching and bumps didn’t clear up within a week, she said that we should make an appointment for him to see a dermatologist.


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

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

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

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

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


We were ready to leave 2015 behind

December 28, 2015. When I woke Dad at 6:30 A.M., he seemed a bit perkier, and it appeared that he might have turned a corner with his cold. My assumption,  short lived at the outset, was dashed when a hard coughing jag took hold of him. After “coughing up a rusty nail,” he decided to stay in bed for another 30 minutes. While Dianne tended to Dad, Mom, Stan, and I had breakfast. When he wheeled himself from the bedroom to the dining room, he announced that he was ready to resume eating. As we discussed several food options, I was cautiously optimistic that he would eat more than 1/8 cup per meal. When Dad said that he would eat an egg, I decided to make egg salad sandwiches for lunch so that we could all eat the same food. I hadn’t had egg salad for a couple of years, and Dad could use the protein.

nyeStar2Dianne got  Dad to do some exercises this morning before he played cards with Stan. At 11:00 A.M., Kathleen arrived to administer Dad’s 30-day physical-therapy assessment. She was pleased with his progress and established some new goals for the next 30 days, which included walking unattended with a walker, transferring in and out of a car, and starting to walk with a cane. Dad had been expressing some dissatisfaction with the progress of his therapy, and he was satisfied with these new goals. Mom and I were ecstatic.

Without much prodding, Dad ate his ¼ cup serving of egg salad for lunch, which was his largest meal by mouth since the swallow test on December 21. Tracy, the nurse, arrived shortly after 12:30 P.M. After listening to his lungs, she said that Dad would benefit from having breathing treatments. She also said that she supported my decision to increase Dad’s oxygen level to 2-1/2 liters when he was using the breathing tanks. She said that the breathing treatments would require a prescription. I didn’t understand what we needed, so before Tracy left, I contacted Sue, our nurse practitioner at the dialysis center, so that she and Tracy could discuss Dad’s requirements. After speaking with Tracy, Sue said that she would submit an order to American HomePatient for a nebulizer and write a prescription for saline and albuterol. I had never used a consumer nebulizer and hoped that it came with some good documentation.

nyeStarA few weeks earlier, I had downloaded the Scott & White Pharmacy app and had configured it for Dad’s prescriptions. In addition to permitting me to reorder prescriptions, it also alerted me when a prescription was ready for pickup. After receiving notification that the saline and albuterol were ready, I picked them up from the pharmacy so that we would have them on hand when the nebulizer arrived.

Stan left for our home in Houston shortly after 1:00 P.M. After he left, I tried to get some work done during the afternoon, but between my bad cold and interruptions to handle Dad’s thick secretions, I didn’t accomplish much.

During dinner, Dad joined us at the dinner table and feasted on ¼ cup of applesauce. Although he wasn’t eating much, having Dad with us at the table was a huge emotional boost for Mom and me. We pestered him constantly to tuck his chin when he swallowed, which irritated him, but having him with us during dinner was wonderful. After dinner, we played cards and Mom won.

By 8:30 P.M., I had administered Dad’s nighttime meds and trach care, and he was drifting off to sleep. I was up a couple of times before midnight to check on his oxygen saturation level. It dropped below 90%, but it returned to a more normal level of 94% after I repositioned the oxygen trach mask over his trach.

nyeStar2December 29. I was out of vacation time, which meant that I had to work the last few days of the year. Most of my coworkers would be taking off this week, so I decided to set my alarm for 4:00 A.M. so that I could sleep in a bit. Unfortunately, my internal clock woke me at 3:15 A.M., and left me feeling anything but well rested. I eventually pried myself out of bed at 3:45 A.M. and set up my computer, crushed some pills for Dad, and woke him up. His oxygen saturation level was holding steady at 94%, and his temperature was 98.5 degrees. Except for one short period where his oxygen saturation dipped below 90%, he had had an uneventful night.

After Dianne helped him up and to the bathroom, she said that Dad’s strength seemed better today. Dad said that he wanted Cream of Wheat for breakfast. It seemed pretty runny to me, so I mixed in some of the thickener, which changed the consistency to something similar to flubber. Left alone, Cream of Wheat will thicken. When you add a thickener to it, it becomes thicker than wallpaper glue, and just about as tasty.

When the HOP bus didn’t arrive at its appointed time, I called the dispatch office and asked about the status of our bus. The dispatcher said that they didn’t have us on their schedule, but just this once they would accommodate us, but we should call during regular business hours and set up Dad’s schedule for the next two weeks. Fortunately, we didn’t have to wait too long, and the bus arrived shortly after 6:30 A.M. After Dianne and Dad left, Mom and I ate breakfast and then I went back to bed. I was still feeling dreadful and thought that a nap would help me.

nyeStarDianne texted me repeatedly during Dad’s session to update me about his blood pressure, which seemed very low that day. After the text messages subsided, I slept until 9:30 A.M. I was able to work for a couple of hours until Dianne called to tell me that because of the scheduling mix-up earlier today, she and Dad weren’t getting a return ride for about an hour. I was worried about Dad’s congestion, so I took the suction machine to the dialysis center. There’s always a suction machine at his station, but he would have to move out of his station when his session was over. Thankfully, moments after I arrived, their bus arrived, so the suction machine and I returned home.

After Dianne and Dad arrived home, Dad joined us for lunch, and he agreed to eat more egg salad. For dinner, Mom prepared chicken thighs. I took the meat from one of the thighs and finely chopped it in the food processor. I then mixed it with cream of chicken soup and some gravy mix so that it was brown. Although it wasn’t much to look at, it had a better consistency than flubber and Dad said that it tasted OK, although he ate only ¼ cup of it.

nyeStar2I spent a significant portion of the afternoon talking with the manager of American Home Patient about Dad’s nebulizer. The device that connects to the oxygen concentrator and adds moisture to the oxygen is also known as a nebulizer, so when American HomePatient submitted the order to Medicare, it was rejected. The Medicare computers could not fathom why we needed two nebulizers. Holly, the manager at American HomePatient, came through for us and said that they would provide us with a nebulizer at their expense. Timothy from American HomePatient eventually arrived at 6:30 P.M. with the nebulizer. He showed me how to use it, but I got some of the instructions wrong, and it didn’t work when I used it on Dad before bed. While Dianne and I were getting Dad ready for bed, I discovered that Michell had not shown her how to care for Dad’s G-tube stoma. After a short lesson, I was ready to call it a night.

Dad’s secretions were still terrible and very thick, so I didn’t get to bed until 9:00 P.M. He slept pretty well, and I went to his room only twice during the night.

December 30. Unfortunately, after the 2:00 A.M. trip downstairs to check on Dad and suction more of his built-up secretions, I couldn’t get back to sleep. After an hour of lying awake, I got up at 3:00 A.M., took a shower, and went to work.

Not only did Dad wake up bright-eyed, bushy-tailed, and full of vim and vigor at 6:30 A.M., Dianne said that she noticed an increase in his strength. As soon as he was dressed, he wheeled himself into the kitchen and asked Mom if she would fix him some more Cream of Wheat for breakfast. He still kept to his ¼ cup portions, but at least he had progressed from his 1/8 cup servings.

nyeStarShortly after breakfast, Jared, the respiratory specialist with American HomePatient, arrived and showed me how to use the nebulizer properly. The nebulizer wasn’t difficult to use, but it came with several attachments that required assembly, and the assembly instructions were not included. I was pleased to see that one attachment would connect to his trach and the other two could be used by mouth. As soon as Jared left, I used the trach attachment to administer a breathing treatment with albuterol. Now that I saw how it worked, I realized that Dad had received similar treatments during his stays at Scott & White Memorial and the CCH.

While Dad was still full of energy, Dianne coached him through some of his physical therapy and swallowing exercises. Shortly after they were finished, Michell arrived, and then Janet arrived at 11:30 A.M. for Dad’s occupational therapy session. Dad was still feeling good, and they had a very productive session with more of their lively conversation.

Kathleen, the physical therapist, arrived at 1:00 P.M. to assess Dad’s ability to transition to the shower. She also wanted to ensure that Michell knew how to assist him during these transitions. Dianne had been trained, but Kathleen wanted both of our aides trained.

nyeStar2After Kathleen left, we had very little time to eat lunch before Kristen would arrive at 2:00 P.M. Dad had a small serving of applesauce for lunch and then rested upright in bed until Kristen arrived. Before starting her therapy session with Dad, we wanted to discuss some of the foods that Dad could eat and the circumstances under which he could drink water. Although water is a thin liquid, she said that Dad could drink it if he had a clean mouth. Any water that he might aspirate would be absorbed by his lungs and would not hurt him. However, if he aspirated food particles with the water, he could develop another bout of pneumonia. Kristen was just about finished with her session with Dad when our good friends, Marilyn and Earl, arrived for a short visit. After they left, Michell and I set up the nebulizer and administered a saline treatment. After the treatment, he seemed to be coughing more. With Dad now eating, I didn’t know whether to be relieved that his chest cold was breaking up, or concerned that he was coughing because he had aspirated. It seemed that I worried a lot.

Dad joined us again for dinner and had leftover chicken and cream of mushroom soup—his first leftovers in seven months. After dinner, we played a wicked game of Oh Hell, and Mom trounced us. As we were wrapping up the game, Dad triggered a nosebleed when he blew his nose. He was still struggling with it when we administered another saline treatment. His oxygen saturation level wasn’t great, but it was over 90%. I hoped that he’d have an uneventful night. I was exhausted and was headed upstairs for bed by 8:15 P.M.

December 31. Dad had a good night, and I was able to sleep until my alarm went off at 3:45 A.M. By the time that I got downstairs, Michell and Dad were up. I gave Dad a couple of pills and got him set up with the nebulizer for an albuterol treatment. After his breathing treatment, I administered his morning trach care and was momentarily alarmed when I noticed the blood in his secretions. He had had another nose bleed this morning, and Michell and I surmised that blood might have gone into his throat. By 5:00 A.M., Dad was ready for breakfast. When I prepared his Cream of Wheat this morning, I restrained myself and didn’t add the thickener. By the time that Dad was ready to eat, the hot cereal had thickened, and Dad and I were both happy.

nyeStarAt 35 degrees, it was feeling like winter this morning when the HOP arrived at 5:45 A.M. We all bundled up to escort him outdoors. Dad was still struggling with a nosebleed when he left.

After a shower, breakfast with Mom, and a little nap, I worked until Dad and Michell returned at 11:15 A.M. Michell said that his nose didn’t bleed during dialysis, but it started again shortly after he got home. Before serving him an appetizing lunch of blue-colored tuna, I administered a saline breathing treatment. I was now also using some of the other attachments that we received with the nebulizer and was giving myself saline breathing treatments.

After lunch, I wanted Dad back on the bed so that he could receive moistened oxygen. After having 2,200 ml of fluid removed during dialysis, he was feeling a little weak and was ready for a nap, so we got what we wanted.

nyeStar2While Dad napped, I worked until 3:00 P.M., when I stopped to accompany Mom to the local HEB. When we got home, Mom made some hot chocolate for the three women in the house. It was chilly outside, and the hot chocolate felt good. When Dad woke up shortly before 4:00 P.M., I administered another breathing treatment. Before he was finished with the four-minute procedure, Stan arrived from Houston. It was New Year’s Eve, and we were going to usher out this year with the family together.

Dad told me that he thought that his cough seemed different. I was encouraged and hoped that his breathing treatments were working. I felt like my saline treatments were also helping to break up my congestion. It would be nice if we would both recover from this crud in our lungs.

The five of us enjoyed our New Year’s Eve dinner together. We prepared some canned salmon and mayonnaise for Dad, and the rest of us had chicken-fried steak. Truth be told, I was pretty sure that Dad would always select salmon over chicken fried steak if he had the choice.

2015_decnye_02The five of us played Oh Hell until about 9:00 P.M., and Mom won the last game of 2015. While getting Dad ready for bed, we administered another breathing treatment. His oxygen saturation level was still good, but he was still receiving a higher concentration of oxygen. I’d feel better when his oxygen level remained normal with less oxygen.

Stan and I stayed up until about 9:45 P.M. so that I could take another dose of cold pills before going to bed. Sometime around 11:00 P.M., Stan heard a noise through the baby monitor and woke me up to check on Dad. Fortunately, when I went downstairs to check on Dad, he was sleeping.

nyeStarI had some serious mixed feelings about this year. On the one hand, it was probably the worst year of our lives, and I was glad to kiss it good-bye. On the other hand, it was a year of blessings and a miraculous recovery, and I acquired some skills that I never wanted.