tube feeding – Tale of Two Parents

More milestones on the road to recovery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting better doesn’t feel like progress

They said that this anniversary wouldn’t happen

Published on January 9, 2018January 5, 2018 by mellowdee55Leave a comment

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.

Michell 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.

Dad 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.

He started feeling better and then went outside and sat on the patio for about 30 minutes. My parents’ 67^th 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.

To 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 125^th 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.

I 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.

When 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.

February 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.

In addition to watching the news during happy hour, we acknowledged my parents’ 67^th 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.

We 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 2^nd on our way out, but that day was not available. I would have to call them later when I had Dad’s calendar handy.

We 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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Improving at a snail’s pace with speed bumps

Published on December 26, 2017December 25, 2017 by mellowdee551 Comment

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.

Dad, 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.

When 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.

We 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.

Mom 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.

After 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.

We 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.

We 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.

While 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.

After 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Killing fire ants: continued progress during caregiver respite

Published on December 5, 2017December 6, 2017 by mellowdee551 Comment

January 16, 2016. It seemed that Dad had had a great night’s sleep, and from all accounts, he woke up feeling chipper. Starting a few days after his return home, every morning, Dad would tell the aides what he wanted to wear and where they could find the clothes in his closet and dresser drawers. After gathering his clothes for the day, they would then help him dress. Today, Dad started dressing himself. To ensure that he was safe from falling, Michell remained nearby while he dressed. By 5:30 A.M., Dad and Michell had eaten breakfast and were ready and waiting for the HOP bus to transport them to dialysis.

After Michell and Dad returned from dialysis, she restarted his tube feed at the slower rate of 55 ml/hour. Julie, the gastroenterologist dietitian, had suggested a faster rate, but Michell and I had agreed to administer the Nepro at the slower rate until Dad went at least a couple of days without feelings of nausea. Meanwhile, it seemed that Dad’s appetite had returned, and he ate tuna with a toasted English muffin and a little applesauce.

After lunch, Michell administered the trach care and midday meds. Her willingness to handle Dad’s trach care had enabled my return to Houston the previous day for a short visit, although I knew that the procedure made Michell very nervous.

When Dad woke up from his afternoon nap, he told Michell that his throat felt scratchy, similar to the way it had felt yesterday before he vomited. Michell wasn’t sure what to do, but Dad agreed to chew on some ice chips to see if that helped his throat, or perhaps his stomach, to feel better. The scratchiness seemed to disappear, and Dad didn’t get sick.

Mom felt very encouraged about Dad’s good spirits today and asked Michell if she could help to get Dad into the sunroom for happy hour. Although she did assist Dad into the sunroom, she probably could have literally carried him, considering her strength and his extreme weight loss.

Mom, Dad, and Michell played a game of three-hand Oh Hell, and they agreed that the game was better with four or more players. By 8:00 P.M., Dad was getting ready for bed. After yesterday’s bouts of coughing and vomiting, Dad seemed to have had a good day, and the secretion reservoir did not show any signs of aspirated food particles.

January 17. Dad had another restful, uneventful night and slept until 6:00 A.M. By 6:15 A.M., he had identified the clothes for Michell to gather for him, and he was at the bathroom sink getting washed up for the day. For breakfast, Dad had 1-1/2 English muffins, a soft-boiled egg, and some home-made jam. The egg and muffin breakfast reminded me of the October morning shortly after Dad had been discharged from the CCH. He had wheeled himself into the kitchen and asked Mom if she would fix him a soft-boiled egg. At that time, he couldn’t eat anything and we weren’t sure if he’d ever be able to eat.

While Mom attended church, Dad and Michell strolled around the yard and inside the house. While outside, Dad noticed some large fire ant beds. Fire ants are a nuisance and somewhat of a danger for those of us who live in warmer climates. Back in the days of being an able-bodied person, he had kept a close eye on pesky insects, such as wasps and fire ants.

Dad had become accustomed to playing cribbage on Sundays, but this weekend, his cribbage buddy was in Houston with me. Fortunately, Michell had agreed to learn the game, and she and Dad played a game before their lunch of grilled cheese and angel food cake.

After lunch, Dad was on a mission to get rid of the fire ant mounds that he found during his morning walk. With a little assistance from Michell, he went out to the garage, grabbed a trowel and the ant poison, walked back through the house and out the patio door to the backyard. Dad dug some dirt from the top of the mound and then treated the mound with the poison. The danged ants probably recolonized a few feet away, but this mound was just below the kitchen window, and he wanted to get rid of it.

All of the walking and ant killing had tired him, and by 3:00 P.M. Dad was ready for a short nap. When he woke up at 3:30 P.M., he astonished Michell by asking for a cup of ice. He wasn’t a fan of the crushed ice and often complained that it made his mouth exceptionally cold.

Mom and Dad had lived in Grand Junction, Colorado, for 21 years, and they were both still fans of the Denver Broncos football team. Dad had specifically requested that he be awakened from his nap at 3:30 P.M. so that he could watch the Broncos beat the Pittsburgh Steelers. During the game, he snacked on green grapes.

After his big lunch, the Nepro tube feed, and some grapes, Dad wasn’t very hungry for dinner, but he did eat some green beans and ice cream. Even if he wasn’t very hungry, he rarely skipped dessert.

The three of them played cards again tonight and at 8:45 P.M., Dad started heading to his bedroom to start his nightly routine. He had now had a couple of good days in a row under his belt, and Michell hoped for another night of rest.

I was relieved that Dad had fared well while I was gone. After the fall that he had had during my absence in December, I was all in favor of uneventful days and nights.

Finally! A proper toilet and a trip to the barber

Published on November 28, 2017 by mellowdee551 Comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Capturing the elusive red cap

Published on November 7, 2017 by mellowdee554 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two bad colds, and a partridge in a pear tree

Published on October 24, 2017 by mellowdee55Leave a comment

December 25, 2015. At 3:45 A.M., I was awakened again by the gurgling sounds coming through the baby monitor, and hurried downstairs to check on Dad. As was the case yesterday, his speaking valve had come off and secretions were running out of the trach and onto his chest. I suctioned his trach, changed his dressing, and got him cleaned up. As Dianne was helping Dad change into a dry nightshirt, we noticed blood on his blanket. We quickly discovered that he was bleeding from his elbow. His fragile skin was susceptible to skin tears, and he often got them by just rubbing against fabric. We cleaned up the blood and bandaged him, and helped him back into bed. He then used the Yankauer wand to suction himself. Fortunately, his secretions were not as bad as they had been last night. While I was in his room, I took his temperature, which was slightly elevated again. By 4:15 A.M., Dad was drifting back to sleep and I was headed upstairs to bed. I slept until 6:45 A.M., when I was awakened by the sound of him coughing. I also heard Mom in the kitchen. It was Christmas morning, so I thought that I should get up and join her. Historically on Christmas morning, I was the one who leapt out of bed before dawn, turned on the lights on the tree, and started the music and the coffee, and hollered for everyone to get up, but I was really dragging this year because of this awful cold.

While I was finding my first cup of coffee, Dianne tried to interest Dad in a sponge bath, but he wouldn’t entertain the idea. During recent physical therapy sessions, he had practiced transitioning in and out of the shower, and he would have a “proper” shower after the holidays. Unfortunately, while he was holding out for a proper shower, he was accumulating several layers of dead skin, which caused flakiness and bumps to appear on his extremities. When I returned to his room to see how he was feeling, he said that he felt better than yesterday, but he wavered a bit when I helped him transition to his wheelchair.

Before I left his room, he instructed me to get out his red shirt and gray-blue trousers for Christmas. I was already wearing a red shirt and was encouraged that he wanted to wear his traditional Christmas attire. He and I weren’t feeling festive, but we still wanted to look the part.

After we all opened our presents, Mom, Stan, Dianne, and I enjoyed our family’s traditional breakfast of Christmas morning loaf and bear claws. After tidying the kitchen somewhat, I accompanied Dad as he wheeled himself from the bedroom to the sunken sunroom where we had the tree. Stan and Dianne helped Dad step down into the sunroom and over to a chair—a real chair and not the wheelchair. My parents and husband had long since resigned themselves to my insistence on our traditional family photo session on Christmas Day, but no one seemed to mind it this year. I usually came armed with fancy hats or other props, but this year I was just happy that our Christmas photo included the four of us.

After all of the excitement of opening packages and navigating the step to the sunken sunroom for photographs, Dad was ready for a nap.

After Dad woke up, he and Stan played several hands of cribbage, and Stan finally won, which was a major feat as Dad was darn good at the game. Dad was still fighting a chest cold and Stan was fighting a migraine, so they were both ready for naps when they finished their grueling match. Mom and I didn’t want to take naps, but we eventually fell asleep while sitting on the couch.

By the time that happy hour rolled around, we were all awake. Dad snoozed during our dinner and joined us for a rousing game of Oh Hell, in which he tied with Dianne for first place. His temperature had been slightly elevated today, but not enough for me to call the after-hours home care nurse.

December 26. Shortly before 1:00 A.M., the grinding sound of the suction machine blared through the baby monitor. After a few minutes, it stopped, but started again at 1:45 A.M. Dad resisted suctioning himself during the night, so I knew that he must be suffering. As soon as I entered his room, I checked his vitals; his oxygenation levels were borderline and his temperature was 99.6 degrees. I suctioned his trach and removed some very thick secretions. As much as I knew that he would hate it, I told him that I had to remove his speaking valve because it was restricting some of the oxygen intake.

Removing the speaking valve meant that he couldn’t call out for help, so I returned to his room a couple of more times before 4:00 A.M. to check on him, and then stayed with him until he woke up.

When he and Dianne were awake, I went to the kitchen for some coffee and to visit with Mom. I checked on Dad again and suctioned his trach, and then returned to my bedroom. Stan was just waking up, and I asked him to let me sleep for another 30 minutes and then wake me so that I could administer Dad’s meds. When I knew that Dad was up and about, I went back to bed and slept until 9:00 A.M.

After I had been up for awhile, Dad wheeled himself into the kitchen and thanked me and apologized for keeping me awake for most of the night. I told him that I would accept his thanks but not his apology. He could not help being sick any more than I could, but I couldn’t sleep if I knew that he was suffering and unable to help himself. As much as I liked having the aides in his room, we had hired quite a few sound sleepers. They often didn’t wake up until after I entered the bedroom.

Stan had purchased a turntable that could convert LP recordings to audio files. My parents have a large collection of 78 RPM records that Stan wanted to save, and he and Dad spent the remainder of the morning trying to get it to work. We were much more successful getting Dad to eat ice and walk around the house than recording music. Dianne was also able to interrupt the post-holiday festivities to get Dad to practice his swallowing exercises.

After lunch, Dad was ready for a nap. A cold front was moving through the area and weather changes usually triggered migraines for Stan, so he also took a nap. When Dad woke up from his nap at 2:30 P.M., I changed out his trach.

He and Stan played a couple games of cribbage, each winning one game. We were able to get Dad to consume one cup of crushed ice during happy hour, which made three cups for the day. I kept reminding Dad that Kristen had told us that nothing improved swallowing more than swallowing. After dinner, we played Oh Hell, and I won on the last hand, beating Mom by two points.

About the time that we finished playing cards, Dad started coughing again. I was a little surprised, because he had coughed only a few times since getting up this morning. It seemed that his secretions thickened and the coughing started with the approach of bedtime. When we got to the bedroom, I checked his oxygen saturation, and it was down to 90% and then dropped into the 80s. Had I not changed out his trach earlier today, I would have thought that his trach might be partially blocked. He hadn’t had his oxygen saturation level drop below 90% in many months. I told him that I’d need to remove the speaking valve again so that we didn’t restrict his oxygen intake.

I set my iPhone timer to wake me every hour so that I could check on him, but I might have been up more often than that. He seemed to be struggling with the secretions and I suctioned a lot of thick secretions from his trach. My goal was to keep his oxygen saturation level at a minimum of 92%, and I would not replace the speaking valve until he reached 93%. At midnight, his oxygen level was up to 92%.

December 27. At 2:00 A.M., I heard the sounds of coughing through the baby monitor. When I approached Dad’s bed, I saw that he had moved the oxygen trach mask away from his trach. In my bleary-eyed state two hours earlier, I had not returned the oximeter to its normal spot, and now I couldn’t find it to check his oxygen saturation. After I finished suctioning him, Dianne found the oximeter, and we saw that his oxygen level was at 93%. When I returned to his room two hours later, it was time for him to get up and get ready for dialysis. Thankfully, his oxygen level had now reached 95%. Dad didn’t usually have dialysis on Sunday, but the schedule had been modified to accommodate the Christmas holiday, which had fallen on Friday this year.

Dad was ready to go at 5:45 A.M. The weather was bad, and when the HOP had not arrived by 6:15 A.M., we were concerned that the bus was not coming; thankfully, they were just running late. After Dad and Dianne left, I went back to bed. Stan woke me about an hour later because he saw a text message arrive on my phone from Dianne about Dad’s low blood pressure. Although I appreciated that she wanted to keep me informed, I was pretty sick and wanted to sleep. Low blood pressure was always a possibility during dialysis and the nurses could adjust the dialysis machines to alleviate most problems.

In all the time that I had been living with my parents since my father’s discharge from the hospital or during weekend visits, I had not missed church on Sunday, but I was pretty certain that the entire congregation would be grateful if I stayed home today. Stan drove Mom to church and I tried to go back to sleep. No sooner had I closed my eyes than I heard the chime of my phone announcing the arrival of another text message. Dianne now informed me that Dad’s oxygen saturation levels were low. It was 10:15 A.M. and I was wearing my scrubs, so I decided that I should get up and go to the dialysis center and suction Dad–something that the nurses would not do. I had not told Dianne that I was coming, so she and Dad were surprised to see me. Between the suction machine and the Yaunaker provided by the dialysis center and our supplies in Dad’s dialysis bag, I had everything that I needed and was able to suction him in a matter of minutes. His oxygen levels were low and he was coughing, but I didn’t find any secretions in his trach. I couldn’t provide any more assistance, so I returned home.

By noon, Dad and Dianne were back home, and Dad was ready to lie down for a nap. After we transitioned him to the bed, I administered his meds and suctioned him again, and this time I pulled quite a bit of thick secretions from his trach. When he woke from his nap at 2:00 P.M., his oxygen saturation level was down to 88%, a reading that would have set off the alarm on the hospital monitors. I decided to administer the contents of a saline bullet before I suctioned him. I had been provided with a box of saline bullets when Dad came home, and each bullet contained 30 ml of saline, which would break down the secretions. I later learned that the use of saline bullets is a disputed practice, with some nurses professing that it can do more harm than good, but was what I was taught by the respiratory therapists at the CCH. When I tested his oxygen saturation a few minutes after I had suctioned him, his oxygen level had improved to 91%.

Dad was ready to get up from his nap. When Stan was here, Dad liked to play cribbage, and he needed to get his cribbage fix before Stan left. When they were finished, Dad was ready for another nap, but gave us strict orders to wake him before happy hour.

When I went to Dad’s room to wake him for happy hour, the oxygen trach mask was nowhere near his trach and his oxygen level was down to 79%. This wasn’t turning out to be one of my better home-care days. I placed his trach mask over the trach and increased the oxygen levels on the concentrator and his oxygen level soon returned to the 90% range.

Because I had been removing Dad’s speaking valve during the night, Stan wanted to find a way that Dad could notify Dianne and me if he needed assistance. Stan returned from a shopping trip with a doorbell and a duck call, neither of which was met with any enthusiasm. We decided to stick with our current process where I would check in on him every hour or so during the nights that he didn’t have the speaking valve.

After playing a spirited game of Oh Hell, where Mom won, we had Dad ready for bed shortly after 8:15 P.M. After Mom went to bed, Stan and I puttered around the house and talked for a while before we went to bed. Although we spoke every night on the phone, we had been living a sort of strange existence for the past few months, and it was nice to just sit and talk. We knew of couples who lived in different cities and “visited” occasionally, but I couldn’t live like that.

When we finally went to bed at 10:00 P.M., I set the timer on my iPhone to wake me every two hours, but I was so sensitive to the sounds emanating from the baby monitor, I was pretty sure that I’d be up more often than that to check Dad’s oxygen saturation levels and to suction him, and I was.

Visions of a good night’s sleep danced in my head. If only.

Published on October 18, 2017October 16, 2017 by mellowdee551 Comment

December 22, 2015. I was taking this week off from work in observance of the Christmas holiday. Dialysis didn’t take a holiday, and we were all up early to prepare Dad for his 5:50 A.M. HOP pickup. While Dad and Michell were away, Mom and I attacked our list of chores and errands.

My most important errand was my appointment with Adan at the Hospice and Home Care Center office, located across the parking lot from the Scott & White CCH. I had spoken and texted with him several times, but we had never met. I was looking forward to meeting with him and reviewing the results of Dad’s MBSS. In addition to what we had been told yesterday, which was that Dad had to avoid thin liquids, the report also contained a list of foods that he could eat. Adan also told me about a thickener that I could purchase at Walgreens that would thicken a thin liquid.

As Dad started this next stage of his recovery, we had to be careful about what we gave him to eat and I had to inspect what I suctioned from his trach during trach care. If the secretions had any color, I might be suctioning food from his trachea, which would mean that he had aspirated the food. To ensure that I didn’t confuse blood with food, we were advised to avoid red food. To further complicate matters, we also had to avoid feeding him white food, like potatoes and oatmeal—unless we colored it—because I would not be able to distinguish aspirated white food from normal secretions.

By the time that I had returned from my errands, Dad and Michell had returned from dialysis and Dad was taking a nap. When he woke up at 1:30 P.M., Michell was horrified to see him sit up and swing his legs over the side of the bed. Fortunately, she had been sitting in the room and was able to stop him from standing up.

When Dad was safely transferred to his wheelchair, I told him about my visit with Adan and the report from Dr. Sherrard. He had hoped that the report would contain more foods, but he seemed to accept his restricted diet for the time being. We had been advised that Dad could eat a cup of food at a time, but Dad now announced that he would eat no more than 1/8 cup of anything during a meal because he didn’t want to get fat. I started to challenge him on this proclamation but quickly stopped after he seemed to dig in his heels about the matter. I told him that we could not cut back on the Nepro if he didn’t eat more, but he wouldn’t budge. It was becoming very apparent that I came by my stubbornness honestly.

Mom and I delivered bread to some of her friends and then stopped by the pharmacy to pick up some prescriptions for Dad. We returned home just as Dad was waking up from his second nap. Mom and I had decided that mashed sweet potato would be the perfect food for Dad. Not only was it tasty and easy to mash, but it was also nutritious and orange. I prepared several servings in ¼-cup containers. As I handed him his first serving, he said that he didn’t like sweet potatoes and that he would not eat such large servings.

He and I launched into a heated discussion. For starters, the news that he didn’t like sweet potatoes was a shocker because he’d been eating them all of my life, if not longer. I wanted him to follow the advice of the doctor and speech therapists. I was steamed. We had been through too much to screw up his recovery. After he said that he’d eat what he wanted, I told him that he could either follow instructions so that he could get better, or I was gone. Ready or not, my planned departure date was February 1, a little over a month from now.

We were going through an unexpected transition. While he had been very ill and weak, I had been able to administer the prescribed care. As his health improved and he regained some strength, he was trying to regain control over his life. I couldn’t really blame him, but I had hoped that we’d be pulling together. We had had some little skirmishes during the last few weeks—starting with when he wanted to graduate from an electric shaver to a razor—but this argument seemed more intense, and it didn’t help that neither of us felt well. When Dad and I were on the same side of an issue, we were a force to be reckoned with. However, when we squared off, we could argue like nobody’s business, and our arguing usually upset Mom. At her pleading, we ratcheted down the intensity somewhat and talked in a more civil tone. I backed down, but I was determined that he would be eating more than two tablespoons per meal by the time that Kristen returned after Christmas.

For all my talk about wanting him eating more, the fact that he was now eating made me very nervous because of his history of aspirating. In addition to keeping a watchful eye on what I suctioned from his trach, I also closely monitored his oxygen levels in the event that he aspirated without leaving tell-tale signs in his trach.

We played cards after dinner, and I won. When I called Stan after Dad had gone to sleep, Stan told me that he would not be here until midday on Christmas Eve. The second half of my day had been stressful, and this news was the proverbial straw that broke the camel’s back and I all but hung up on him.

December 23. Dad had a good night’s sleep, but I woke up every time that he moved around in that creaky hospital bed. It didn’t help matters that I went to bed feeling like I was coming down with a cold. When I woke up at 12:30 A.M., my throat felt like it was on fire. I took some Advil, which seemed to help. During more bed creaking sometime around 1:30 A.M., I remembered that I left a lumen print outside. Rain was forecasted for the night, so I got out of bed and retrieved it.

Sometime around 5:30 A.M., I heard Dad again, and I went downstairs to check on him. He seemed ready to get up, but shortly after transferring him to his wheelchair, he wanted to return to bed.

Michell finally got Dad up and ready for the day at 6:30 A.M. For breakfast, I served Dad two tablespoons of green oatmeal, which looked about as appetizing as it sounds. After finishing his oatmeal, Michell prepared some shaved ice for him, which he ate.

Becky, the owner of One on One Personal Home Care, called and gave us the disappointing news that Katherine would not be returning. Instead, Dianne would replace Gale for the foreseeable future. Dianne had replaced Amanda during Dad’s second week home. We had liked her and were pleased with this news, although nobody could replace Gale.

Michell told me that Dad was insisting that he wanted to get on the bathroom scale to weigh himself. I told her that we’d let him, but that the two of us would help him get on and off of the scale to ensure that he didn’t fall. With his shoes on, he weighed 134.5 pounds. He was dreadfully thin and desperately needed to gain a little weight. I could feel all of his bones across his back and ribs. Getting on the scales probably wasn’t one of his physical therapy goals, but it was a little victory for him.

Michell started coaching Dad through his swallow therapy exercises, but Dianne arrived before they finished. Before Michell left, I gave her a gift card for Christmas from Stan and me. Shortly after she left, Tracy, the nurse, arrived and was soon followed by Janet and Brenda, the occupational and physical therapists.

After Brenda left, I prepared a nice bowl of green mashed bananas for Dad’s lunch. Per his specifications, I served him a mere two tablespoons of the banana and ate the rest myself, but without the green food coloring. I still found it unbelievable that he preferred the nasty green bananas over the sweet and natural-colored sweet potatoes.

After he finished consuming his green lunch, Dad was ready for another nap. While he slept, I ran a few pre-holiday errands. I was still feeling pretty lousy, and when I returned home, I was ready for a nap. When I woke up, I found Dad and Dianne sitting outside on the patio. It was a beautiful day, and the temperature was in the low 80s, which was seasonably warm for two days before Christmas. It was such a nice evening that Dad wanted to stay outside and have our happy hour on the patio.

Although Dad received a clean bill of health and accolades from the therapists and the nurse, he had coughed up a lot of secretions today. I didn’t see anything that looked like one of his colored meals. I was a little concerned about the yellow yogurt that he ate for dinner because I probably couldn’t distinguish it from his secretions.

Dad won at cards tonight, and we were all tucked in bed by 8:00 P.M. There was no doubt about it; I was down with a wicked chest cold.

December 24. We had a terrible night. Shortly before 2:00 A.M., I heard a gurgling sound coming from the baby monitor. I ran downstairs and saw that Dad’s speaking valve had blown off of his trach, he was sleeping on his side, and secretions were spewing out of his trach and onto his bed. I woke him, disconnected him from the tube feed and oxygen concentrator, and sat him on the side of the bed. During the 45 minutes that we sat on the side of his bed, he coughed and suctioned up at least 1/2 cup of secretions. When his secretions seemed to be under control, I helped him back into bed and checked his temperature and oxygen levels, and both were good. Dad drifted back to sleep, and I trudged back upstairs to bed.

When the alarm went off at 4:00 A.M., I could not get out of bed. I was now suffering from this danged cold, and an interrupted night’s sleep hadn’t helped matters. While I was contemplating whether or not to move, I heard Dianne tell Dad that they would have to ask me about something, so I decided that I needed to get up now.

It seemed that Dad was feeling pretty weak and didn’t want to go to dialysis. I told him that he had to go today. Because of Christmas, the dialysis clinic was closed tomorrow, so he couldn’t postpone today’s session. He acquiesced and started to get up and get ready to go. I felt terrible for him. With the kind of secretions that he had, I suspected that we were both suffering from chest colds. As bad as it was for me, it had to be terrible if you couldn’t handle the extra secretions caused by a cold.

Dianne hadn’t been to the dialysis center since early October, and there wouldn’t be anyone there today that knew Dad’s normal routine. To ensure that he would be OK with the new aide and the holiday crew, I followed the HOP to the dialysis center, and I was glad that I did. The “C” team was on duty; they had never dealt with a trach patient, and his station was not equipped with a suction machine or a wand. I also wanted to ensure that they didn’t remove too much fluid and dehydrate him. The last thing that we needed today was a repeat of Thanksgiving’s visit to the hospital and subsequent visits from Deputy Blankenmeier and Adult Protective Services. When everything was set up for him and I felt that he would be OK, I returned home.

Stan arrived at my parents’ house just before 10:00 A.M. Shortly before 11:30 A.M., Dad and Dianne arrived home. They had left the dialysis center at the stroke of 11:00 A.M. and were the last ones on the bus and the first stop on the return trip. According to Dianne, Dad coughed up and suctioned about as much during dialysis as he did last night. He was feeling weak, so we transferred Dad to the bed and administered his midday meds. Before he could fall asleep, he started vomiting, probably because of his CDiff pill. His stomach was practically empty, but I was always scared of aspiration when he vomited.

After Dianne and I got him cleaned up situated for his nap, we were ready for our lunch. I didn’t want him left alone, so I ate lunch in his room. When she finished her lunch, Dianne stayed with Dad while Stan and I ran some errands.

Dad slept for most of the afternoon and was still asleep when Stan and I returned home. Dad woke up briefly for happy hour but wanted to lie down again while we ate dinner. He still felt a little queasy and didn’t want to eat dinner, so he opted for his Nepro diet.

All that napping must have paid off because he won tonight’s game of Oh Hell.

Dad’s normal temperature ranged between 97.2 and 97.6 degrees. After he went to bed, his temperature started rising. By 9:30 P.M., his temperature had reached 99.2, prompting me to call the after-hours nurse. At 10:30 P.M., Dad’s temperature returned to 97.2, and I went to bed. After I finally fell asleep, Leo, the night nurse, returned my call. Leo told me that I shouldn’t take Dad’s temperature more often than once every four hours and that Dad’s temperature was still within normal range. After that little dressing down, I went back to sleep.

I had always been the first one up on Christmas morning, but all I wanted for Christmas this year was a good night’s sleep.