Uncategorized – Page 7 – Tale of Two Parents

Today, a shower. Tomorrow, a proper toilet?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Capturing the elusive red cap

Published on November 7, 2017 by mellowdee554 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We were ready to leave 2015 behind

Published on October 31, 2017November 1, 2017 by mellowdee55Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

In my mind, everything was riding on the MBSS

Published on October 10, 2017 by mellowdee55Leave a comment

December 18, 2015. When I started work at 4:00 A.M., everyone else was still sleeping, and the house was very quiet. A couple of hours later, I heard sounds of people stirring in Dad’s room. When I checked on him, he seemed to be moving slowly. He sounded congested, and he used the suction wand a lot. By 8:00 A.M., his coughing had subsided somewhat, and Michell had him ready for the day. An hour later, she donned her drill-sergeant demeanor and started coaching him through his exercises. She had him walk with the walker throughout the tiled areas of the house and work on his core and leg exercises. During short breaks, she brought him a couple of cups of crushed ice so that he could practice swallowing. I appreciated the way that she kept after him to exercise between therapy sessions. By 10:45 A.M., Dad was exhausted and was ready for a nap.

I had a date in Houston that night with my husband, and I wanted to leave Temple before noon. I logged off from work at 10:30 A.M. and started packing up to leave. After a quick lunch, I was out the door by 11:45 A.M. The traffic was light until I got near Houston, and the trip was relatively hassle-free. I arrived home shortly before 3:00 P.M. and treated myself to a short nap on the couch with my two cats, which meant that I merely catnapped.

In Temple, Stephanie, the home-care nurse, arrived at 12:45 P.M. and said that one of Dad’s lungs “didn’t sound all that clear.” She told Michell and my parents that every couple of hours she wanted Dad to take ten deep breaths and hold the last breath. The nurse said that this exercise would make him cough, and I surmised that it was supposed to help clear his lungs, but I doubted that he did it even once.

Kristen arrived at 2:00 P.M. for Dad’s swallow therapy, and she was pleased with his progress. At the end of the session, Kristen seemed excited about Dad’s upcoming MBSS on Monday and said that she thought he’d do well. I sure hoped so.

Kristen was barely out of the house before Michell had Dad walking the halls with his walker, and she then coached him through a few bed exercises. While he was on the bed, he decided that he might as well take another nap.

While Stan and I enjoyed “A Christmas Story” in Houston at TUTS, Michell and my parents played three-handed Oh Hell, and Michell won.

December 19. Dad and Michell woke up at 4:00 A.M. and started getting ready for dialysis. Dad had slept fairly well, but at 2:30 A.M., Michell had awakened to see Dad getting himself back under the covers after sitting on the side of the bed to use the urinal. He made her crazy whenever he moved around the bed without asking her for assistance.

In Houston, Stan and I slept in until the decadent hour of 6:00 A.M. I allowed myself to laze around the house for another hour or so before going to the grocery store for gas and some items to take back to Temple. Over the past several months, I was lucky to have had friends who were quite willing to help me meet deadlines while I was living out of town and careening into Houston on my tight schedules. On my way out of town today, I met one such friend from my photography class for a little bit of a catch-up, and then I delivered some holiday biscotti to some other friends. This would be my last visit to Houston until after the new year.

I had finished all of my errands and was en route to Temple by 11:00 A.M. During my drive to Temple I stopped twice—once to stop at Buc-ee’s and once when the DPS stopped me for speeding. After receiving the warning for driving 75 MPH in a 70 MPH zone, I maintained my speed at two miles over the speed limit and was then tailgated for the remaining 80 miles of my trip.

Meanwhile, Dad and Michell returned home from dialysis at 11:45 A.M. After Michell administered his midday meds and trach care, he was ready for a nap. I arrived at my parents’ home at 1:55 P.M., just as Dad was just waking up.

I was starting to worry about Dad again. We had not received his lab results, but I was fairly certain that he was suffering from CDiff. His probiotic meds arrived today, and I hoped that they would help him. This danged infection weakened him, and I didn’t want him to be too weak to perform well during the modified barium swallow study (MBSS) on Monday.

Later in the afternoon, LoSharris and Tom, my parents’ neighbors, stopped by with some candy and cookies, and the five of us had a nice visit. It seemed almost like old times.

After dinner, we played cards. Dad won, but I gave him a run for his money. By 7:30 P.M., Dad was getting ready for bed and drifted off to sleep in less than 20 minutes after being helped to bed.

December 20. Dad woke up a couple of times during the night to use the commode. Because of the baby monitor in his room, I woke up whenever he woke up or stirred in his squeaky hospital bed. Although he was able to get back to sleep shortly after 2:00 A.M., I didn’t have his gift of falling asleep at the drop of a hat. After a fitful rest, I eventually got up at 7:15 A.M., which was also when Dad woke up.

Our biggest challenge with Dad was that he now tried on a regular basis to sit up on the side of the bed while still plugged into all of his devices, which tended to put a strain on the lines that tethered him to the bed. After coming close to hurting himself last week, I would have thought that he’d ask for assistance. Regardless of how often I reminded him that we had hired aides whose job it was to assist him, he didn’t want to bother them. Our family had never needed outside help and I suspect that he was uncomfortable in asking for it now.

For as many years as I could remember, Mom had baked her traditional Christmas morning bread for close friends. Even the dramatic change in our lives could not deter her from this tradition, and she had been baking steadily during the past week. Today, she brought three loaves of bread with us to church—one for each of our favorite church ladies: Kris, Sue, and Sue’s mother, Joan. I was finally able to connect with Pastor Don and his wife, and I gave them some of my homemade biscotti.

While Mom and I were at church, Michell had had Dad walk 212 feet, which was not as far as Friday but was still a great effort. He also did some other exercises, but he had read about some football games that would be televised today and wanted to watch them. Being interested in anything on the television was significant. He had not shown any interest in watching anything on the television since before his surgery some 7-1/2 months ago. The fact that the Houston Texans were playing the Denver Broncos helped to entice him. At halftime, he thought that the Broncos had won because they had a 20-point lead, so he quit watching. Stan told me later that the Broncos had blown their lead and had lost the game.

Dad expressed some concern about feeling the trach when he swallowed. He had never spoken about the trach, so the comment seemed like it was coming from out of left field. I had a nagging feeling that he feared that he might not do well tomorrow with the MBSS test and was bracing me for a poor outcome.

After happy hour, I followed him to his room and asked him if he was apprehensive about the swallow test the next day. I didn’t get much in the way of a response from him, but knowing him as I do, I suspected that he was nervous. Hoping to allay his concerns, I told him that Kristen was confident that he would do well. Truth be told, I was as nervous as a cat about this test.

By 7:30 P.M., Mom had beaten us at Oh Hell, and Dad was on his way to bed. Less than an hour later, Dad was sleeping, and everyone else in the house was moving in that direction.

December 21. My iPhone alarm woke me at my usual time and I grabbed some coffee and logged on to work at 3:45 A.M. I could hear a little commotion in Dad’s room at 5:00 A.M., when Michell helped him to the bathroom. A few minutes later, she helped him transfer back into the bed and reconnected his tube feed and oxygen lines. The room was quiet until 8:00 A.M., when Michell woke him. By 9:15 A.M., Dad was dressed and ready for his busy day.

Brenda arrived at 10:15 A.M. for Dad’s physical therapy session. She had him walk with the walker and perform a series of sink exercises. He didn’t seem to exhibit any weakness during his session, which eased my fears about him being too weak for his swallow study this afternoon.

While we were waiting for the HOP to arrive, the dispatch office called to tell us that the driver was lost and could not find our house. I stood at the end of the driveway with the phone and provided turn-by-turn instructions for the driver. Fortunately, the schedulers pad the required transportation time, so he wasn’t more than a few minutes late to our house, and we arrived early to the hospital for Dad’s appointment.

While we were in the x-ray waiting room, Holly, Dad’s speech therapist during his hospital stays, stopped by to see us. I was very fond of her, and it was thoughtful of her to stop by to say hello. After introducing Michell and reintroducing Dad to her, there were hugs all around. She was very reassuring, and before she left, she told us that Dr. Sherrard knew every trick in the book to get good results from Dad so that he could pass the test. When the tech escorted Dad to the exam room, she said that there was room for the three of us to observe the procedure without being exposed to the x-ray.

The only thing that I would ever see that’s cooler that this is a total solar eclipse, and that wouldn’t happen for another 20 months. Barium was mixed with a thin liquid, like water, a thickened liquid, like nectar, and a soft solid. Dad sat in front of an x-ray, and the barium additive enabled us to observe how he swallowed the liquid and food items. When Dr. Sherrard saw how something seemed to get caught when he swallowed, she had him repeat the test, but with his chin tucked. The chin tuck made a huge difference that even the three of us could see. The doctor confirmed that he was able to swallow thickened liquids and soft foods, which was such good news! At the end of the test, I hugged Dr. Sherrard and started tearing up. I didn’t know how Dad felt about this day, but I had been worrying and praying about this test from the time that it was scheduled. He had failed this test twice during his hospitalization, and the doctors had written him off as a chronic aspirator—someone who would never be able to swallow food again. As far as I was concerned, everything had been riding on a successful outcome of this test.

Michell and Dad took the HOP back home, and Mom and I left the hospital in my car. On our way home, Mom and I stopped by the pharmacy to pick up another prescription for Dad’s CDiff. We were hopeful that Dad would have better luck with this medication. While we were waiting in the pharmacy, I texted Stan, Sue and Kris, and the pastors to share the good news about Dad’s test results, and they sent back a flurry of amens and hurrahs.

Kristen arrived at the house at 4:00 P.M. She had already received the results of the MBSS from Dr. Sherrard via Adan. She was very excited about the test results—almost as much as I was—and was ready to progress to the next level. She wanted Dad to eat something and suggested applesauce. We didn’t have any, but we had homemade apple butter, which Dad had eaten on waffles every weekend before his hospitalization. He had not eaten since dinner on May 5, so his taste buds weren’t used to anything stronger than crushed ice. From his reaction, you would have thought that we were feeing him pureed jalapenos. He went on and on about the spicy food that we gave him. As Kristen coaxed him to swallow more bites, I tucked my chin as he swallowed, willing the apple butter down his esophagus.

During our very happy happy hour, our neighbor Jane called. I had left a message for her to call me so that I could arrange to return a casserole dish that had held a yummy dinner. During my visit with her and her husband, Mickey, I shared our wonderful news about Dad and caught them up on some of our trials since his return home. They served me wine, which caused me to linger longer than I should have. By the time that I returned home, our dinner was a little overdone. I was too happy to be very contrite over a slightly-burnt dinner.

Dad sat with us during dinner, and we served him a very tiny portion of chocolate pudding. Following our dinner of pudding and burnt casserole, we played a game of Oh Hell, and I won. After his busy and eventful day, Dad was in bed and nodding off to sleep by 8:30 P.M.

http://www.uwhealth.org/voice-swallow/modified-barium-swallow-study-mbss/11461

Why did it have to be a snake?

Published on October 3, 2017 by mellowdee55Leave a comment

December 14, 2015. We had a 9:00 A.M. appointment today with Dr. Pfanner, the gastroenterologist. Before Michell had left on Wednesday, she had mentioned to me that Dad had seemed a bit weaker. His strength had seemed to wax and wane depending on the quality of his sleep. However, yesterday Katherine also mentioned Dad’s weakness and suggested that we ask the doctor to order another CDiff test. Some of Dad’s symptoms were returning, and we suspected that his last course of antibiotics had not completely eradicated the infection.

When we arrived at the doctor’s office, the nurses and doctor were agog about Dad, repeating how much better he looked than he had just a few weeks earlier. The nurse said that seeing him “just made her day.” They were also pleased that he had gained a couple of pounds. His weight was up to 139 pounds. The dietitian said that if he passed his swallow test, she would recommend that we start him on bolus feeds, which would mimic three to four meals per day. I also asked her about putting him on a probiotic diet to reduce the likelihood of contracting CDiff. She thought that that was a good idea and that she would discuss options with Dr. Pfanner. I also asked her if we could have Dad retested for CDiff because for the past couple of days he seemed to be exhibiting some of its symptoms again. Dr. Pfanner told me to order VSL#3 Probiotics for Dad and administer one sachet a day in his feeding tube. He said that he would rather wait a couple of more days to see if Dad’s symptoms persisted before retesting him for CDiff.

The gastroenterologist’s office was located in the clinic at the hospital. While Dad and Katherine waited for the HOP to take them home, I decided to stop by my parents’ cardiologist, whose office was in the hospital. Dr. Elizabeth Ebert was not available, but I was able to speak with Jennifer, her nurse, about removing Metoprolol, a Lopressor, from Dad’s list of meds. To this layperson, this drug seemed at cross-purposes with another one of his medications. Jennifer said that Cardiology would defer to Nephrology about all of his blood pressure prescriptions, so I would need to contact Dr. Issac. After Dad and Katherine returned home, Dad took a nap.

Mom had mistakenly scheduled the physical therapist for 1:30 P.M., which conflicted with Dad’s standing appointment with the speech therapist. Although he had been a little weak during his last session, he had a good physical therapy session today with Brenda. When Kristin, the speech therapist, arrived at 2:00 P.M., she said that she could reschedule Dad’s session for the same time this Friday.

At 4:30 P.M., I changed Dad’s trach tube. It didn’t go as smoothly as most of the other changes, but it wasn’t nearly as horrible the last the time when I got the two trach collars tangled up on the collars’ Velcro. I’m always unnerved when Dad seems like he can’t breathe, and he turns all red, which can happen after 10 seconds. Katherine is a wonderful CMA and had been handling the daily trach care and the meds for me, but she said that she didn’t want any part of the trach changing and she was glad that I was around to do it.

During happy hour, Dad seemed to use the Yankauer suction wand more often than usual and coughed up a lot of secretions. It wasn’t unusual for him to cough more than usual after I changed the trach, and I suspected that the lubricant that I used on the trach tube was the culprit. The addition of ice, which probably hardened the lubricant somewhat, might have contributed to the additional irritation and secretions.

December 15. Dad and Katherine were up at 4:15 A.M. Except for waking up for a few minutes at 11:30 P.M., Dad had had a good night’s sleep. Mom had called the dispatch office yesterday to set up Dad’s pickup schedule for the next two weeks. Because we now understood that we had to schedule time by the target arrival time and not the pickup time, today’s bus arrived at the more reasonable hour of 6:00 A.M., approximately 25 minutes later than before. Katherine mentioned that Dad’s CDiff symptoms were worsening and that the diarrhea seemed to have returned with a vengeance. As much as I liked Dr. Pfanner, I was just a little annoyed that he hadn’t ordered the lab work and wouldn’t do so for another 24 hours.

Today, I drove 65 miles to Austin to attend an annual lunch with a group of former coworkers. It was a long way to go for lunch, but we had been meeting for about 15 years, and I always looked forward to seeing these guys. The luncheon also gave me an opportunity to share more of my holiday biscotti and experience one of my normal activities and traditions.

While I was in Austin, Dad seemed much weaker and stumbled and almost fell when he tried to reach for the urinal. Later, he almost toppled over when he got up from the commode. Katherine was learning that she had to keep a watchful eye on him at all times. Dad admitted to her that he was feeling weak and tired, and by 1:00 P.M., he was ready for a nap.

Dad was waking up from his nap when I arrived home at 2:00 P.M. I worked the rest of the afternoon, stopping at 5:00 P.M. when Dad announced that it was time for happy hour.

While we were eating, Dad was sitting in his wheelchair in his bedroom, but became impatient with us and decided to wait for us in bed. Instead of asking for assistance, he decided that he could make the transfer from the wheelchair to the bed by himself. We didn’t realize what he had done until we went to get him to play cards. Because his tube feed and oxygen were attached to the wheelchair, the oxygen and G-tube lines were pulled taught. Once again, I was relieved that he hadn’t decannulated himself by such a stunt. Katherine thought that he was OK, but I noticed a stain on his shirt. When we lifted the shirt, blood appeared to be seeping from his G-tube stoma.

Instead of playing cards, I called the Homecare nurse and texted Sue. Sue called me immediately. We spoke at length, and she tried to assure me that he was probably fine. While I had her on the phone, I decided to tell her about my conversation with Dr. Ebert’s nurse. Sue said that she wanted to keep Dad on the Metoprolol. In response to my call to the Homecare after-hours number, Leo, the night nurse, stopped by, cleaned around the stoma, checked Dad’s vitals, and left at 9:30 P.M. To avoid any similar incidents in the future, we assured Dad that we wanted him to call us at any time and that assisting him would not be a burden.

It was way past bedtime for all of us, and we prepared Dad for bed as soon as Leo left.

December 16. After our late night with Leo, Dad slept in until almost 7:00 A.M. He had now endured the two additional days of CDiff symptoms, so I called Dr. Pfanner’s office as soon as his office opened. I spoke with Talitha, his nurse, to see if she could order a CDiff test for Dad, but she wanted to check with the doctor. After I tired of waiting for a return call, I emailed Dad’s nephrologist to see if he would order the test. By the time Talitha got around to placing the orders, she saw that the order had already been placed by nephrology.

At 10:45 A.M., Michell returned for her week with us. With all of the folderol last week, her week off was only three days. I’m sure that her time off flew by. After Katherine left, I found a note that she had written:

Mr. & Mrs. Locke & Melody,

I just wanted to say thank you so very much for allowing me the opportunity to meet y’all and care for Mr. Locke.

This week has been a true blessing not only for the work (money) but for getting to be a part of y’all’s lives. It’s been a true pleasure.

Have a wonderful week.
Katherine E. S.

Dad had a full schedule of therapists today. Less than an hour after Michell arrived, Janet arrived for Dad’s occupational therapy session. As soon as she left, Dad wanted to lie down for a nap.

Dad woke from his nap about 30 minutes before the always-prompt Kristen arrived for Dad’s swallow therapy session. She was very encouraging and said that Dad was progressing extremely well.

About 40 minutes after Kristen left, Brenda arrived for Dad’s physical therapy session. She also said that Dad was progressing well and said that she would speak with Kathleen, her manager, about increasing Dad’s goals.

Shortly after happy hour, Timothy from American HomePatient stopped by with 12 more tanks of oxygen and a new tube feed pump. Before he left, he showed me how to use it. This pump wasn’t very different, but it used different-sized bags. We had a huge supply of the bags that fit the other pump, but he could not take them. We had so many boxes of supplies that I decided to stash the extra bags in case we needed them again. After Timothy left with the bleeping Kangaroo pump, we played cards, and Michell won.

When I went upstairs to bed, I called Stan to tell him about the day and say goodnight. He was at the office and would be working all night. He also told me that he was now on call for the next week, which meant that he could not drive up to Temple this weekend. Damn.

December 17. I had been working for about 30 minutes when Dad and Michell got up around 4:00 A.M. Each morning when Mom got up, she stepped out the front door to get the newspaper. My parents had the most wonderful paper carrier on earth. Each morning he would pull into their circle driveway, get out of his car, and place the newspaper on the front porch. On most mornings, my parents could simply lean down and pick up the paper without stepping out of the door onto the front porch.

Today, however, was different. Although the paper was in the right place, Mom saw something on the front porch that kept her from opening the door. When Mom looked out of the front windows, she saw a large snake on the front porch, which wasn’t all that unusual. It scared her enough, though, that she wouldn’t open the door to get the paper, and she came to the office to get me—the biggest wuss in the world when it comes to snakes. When I looked out the front window, I had to laugh. The snake turned out to be a bungee cord that fell off of Timothy’s hand truck during his delivery last night. With the bravado of Crocodile Dundee’s better half, I boldly walked outside, captured the bungee snake, and picked up the newspaper.

Before they left for dialysis, I shared the story of the bungee snake with Dad and Michell, and we all got a good laugh out of the tale, including Mom.

The bus arrived back home with Dad and Michell at 11:25 A.M. After administering Dad’s meds and getting him settled for a nap, Michell and I collected another stool specimen that I dropped off at the Scott & White lab.

With all of the interruptions of the day, I didn’t get back to work until 4:00 P.M. I was exhausted and ate some M&Ms in an attempt to stay alert for the short time that I worked. We lived on a schedule here, so I stopped working at 5:00 P.M. We had happy hour before dinner at 6:00 P.M.

Because we had had a big lunch of meatloaf sandwiches, we weren’t terribly hungry at dinnertime, so we had minestrone. After dinner, the four of us played cards, and Mom won.

It felt so easy and comfortable now that Michell was back with us. I made a point of telling her how glad I was that she was back. I should do that more often. It had been a busy day of snake wrangling, test samples, errands, and even some work. I was in bed by 8:15 P.M and glad to be there.

Not all aides are created equal

Published on September 26, 2017 by mellowdee55Leave a comment

December 8, 2015. Dad woke up at 2:30 A.M. and wanted to get ready for dialysis. Fortunately for Michell, she was able to convince him to stay in bed until 4:00 A.M. Unfortunately, the commotion in Dad’s room woke me and I couldn’t go back to sleep. After tossing and turning, I finally got up at 3:15 A.M.

As I was walking to my office with my first cup of coffee, I heard the annoying alarm of the new Kangaroo pump coming from Dad’s room. Unbelievable.

Dad was dressed and ready to go to by 5:25 A.M., and it was a good thing. The HOP arrived at 5:35 A.M. to take him to dialysis. Dad was fortunate that he had a dialysis catheter and not the typical fistula for dialysis. The catheter patients required an RN to get them set up and could enter the clinic as soon as they arrived. Other patients had to remain in the waiting room until their appointed time. When you get picked up at 5:35 A.M. for a 7:00 A.M. chair time, you could have quite a wait before being called.

At the stroke of 8:00 A.M., I called American HomePatient and asked to speak with Holly, the general manager. I explained to her that the Kangaroo pump that Timothy brought us yesterday had started alarming only 12 hours after we started using it. She suspected that the power cord might be the culprit and told me that she would stop by later in the day with a new one.

Dad and Michell returned home from dialysis shortly after 11:30 A.M. After we administered his midday meds and trach care, he was ready for a nap.

Becky called and told us that she had a temporary replacement for Gale. Her name was Joy, and she would start tomorrow. She didn’t say so, but I knew that Michell was relieved that she would not have to stay an additional week. Dad was a challenging patient, and the aides were somewhat sleep deprived at the end of a week with us. Michell and Gale both admitted that they slept a lot for a day or two after they returned home. We were fortunate that they seemed to like all of us.

After lunch, I went to the pharmacy to pick up more Renvela for Dad. By now, the pharmacy clerks at the Scott & White Pharmacy knew me. When the clerk told me what I owed, I felt something like a wave of nausea. Instead of being charged $187, which was what I had paid in September, the bill was $683.20, which was half of the normal retail cost. Seeing my distress, the clerk asked me if Dad was in the donut hole (the gap in Medicare coverage for prescription drugs). When I told her that I didn’t know, she checked his account, and it seemed that he was. I told her that I didn’t want the drug now and would contact his doctor. I sat in the car and texted Sue, the dialysis nurse practitioner, and asked her how badly Dad needed this drug. She said that his phosphorus levels were good and that we could hold off until January, when his new year’s Medicare coverage would start. I went back inside and told the clerk that I would wait until January to pick up his refill.

At 3:30 P.M., Holly from American HomePatient stopped by with another power cord. She looked at our Kangaroo pump and said that it was not a portable model and that if Dad was going to spend most of his time in a wheelchair, he would need a different pump. Obtaining a new pump would require communication with Medicare before she could order a replacement. She told us that we should have the new pump in 5—7 days. With any luck, the confounded beeping would not drive us mad before the replacement pump arrived. I found this situation perplexing. This was the second time that we seemed to have equipment that required Dad to remain in bed. I had had a heated discussion with an order clerk from American HomePatient who told me that Dad was using too much oxygen and that he should remain in bed and use the oxygen concentrator and nebulizer. Now we seemed to have a pump that was supposed to remain on the IV pole by the bed. It was like home care catered to patients who were destined to get worse. The issue with the Kangaroo pump left me baffled because the pump had an internal rechargeable battery. During the day, we moved it from the stationary IV pole and attached it to an IV pole on a wheelchair—an IV pole that was supplied by American HomePatient. Suddenly, after a couple of weeks, suddenly we weren’t using the pump in the manner it was designed. To top it off, it only alarmed when it was plugged in. What’s the point of a rechargeable battery if you can’t unplug it? On the other hand, Holly was very nice, and we now had her direct phone number, and she encouraged us to call her if we had any problems.

At 5:00 P.M., we were all ready for happy hour. After dinner, we played cards, and Dad won again.

December 9. Dad had a great night’s sleep and didn’t wake up until 5:30 A.M. It was changeout day for the aides, and the transition would take longer today because Michell had to orient a new aide. In preparation for her week off, she changed the linens on her bed and gathered her belongings.

My morning of meetings started at 8:00 A.M. During one of my meetings, I heard the doorbell ring and assumed that the new aide, Joy, had arrived. When my meetings ended at 11:00 A.M., I ventured out of the office to meet Joy. When I entered the kitchen, I was surprised to find only my parents and Michell. I was correct in my assumption that Joy had arrived, but evidently, the orientation had not gone well. As Michell was telling her about dialysis, Joy objected to having to stay with Dad. Before Michell got much further in her explanation, Joy asked when she could take breaks. However, the final straw for Michell was when Joy asked if it was OK for her to smoke outdoors. Michell told her that because of the trach and the oxygen, she didn’t think that smoking was allowed at all. A couple of minutes later, Joy walked out the door to her car—presumably to get her belongings. When she didn’t return after a few minutes, Michell noticed that Joy’s car was gone.

When Mom called Becky to tell her about Joy’s short stay, Becky was horrified—for a couple of reasons. Besides the most obvious reason, Joy had told her that she had quit smoking. Becky asked Michell if she could stay an additional day while she tried to find someone else to fill the position. Michell, who was now very protective of Dad, said that she would stay until Becky could find a suitable replacement.

Shortly after Joy departed, Brenda arrived for Dad’s physical therapy session and Kathleen, her supervisor, arrived to observe Dad transfer in and out of the shower. As Kathleen was leaving, she said that she was satisfied with Dad’s progress. However, the first time that Dad showered, she wanted an aide from physical therapy to assist him and show us how to protect the dialysis catheter. Because we had to protect it from any dampness, I was told to purchase some catheter guards to protect the ports. I had emailed some links about different catheter guards to Sue, and she had approved of a couple that I had ordered online. After Kathleen left, Brenda continued with Dad’s physical therapy session. Brenda had him walk 96 feet. She tried to have him complete multiple sets of exercises, but Dad seemed to be experiencing some weakness and could complete only one set.

After Brenda left, Dad took a nap, and I ate lunch with Mom and Michell.

Kristen arrived promptly at 2:00 P.M. for Dad’s swallow therapy session. I was not able to attend this session, but according to Michell, Kristin was very pleased with his progress. She had Michell get Dad some ice to eat during their session. She encouraged us to keep giving him ice and said that nothing would improve swallowing more than swallowing.

After Kristen left, Michell coached Dad through his occupational therapy weight exercises and some of the bed exercises prescribed by the physical therapist. Michell thought that Dad was a little weak this afternoon and didn’t pressure him to do many exercises.

From what I could observe, we had had a good day. I was so pleased with Michell. She had really stepped up and proved herself to be a valuable member of our little team. I was thankful that we found out about Joy while Michell was still here; otherwise, we could have been without an aide.

After dinner, we played cards, and Mom was tonight’s winner. By 8:00 P.M., Dad was in bed and drifting off to sleep.

December 10. At 2:30 A.M., Dad woke up for a few minutes, but then drifted back to sleep. At 4:00 A.M., Michell woke him so that he could get ready for dialysis.

I had a couple of early morning meetings and didn’t see Dad and Michell leave when the HOP arrived. Becky called and said that she had found a replacement aide for Michell, and her name was Katherine. After yesterday’s experience, Mom and I were practically holding our breath while we waited for her to arrive.

Katherine arrived shortly after 9:00 A.M. and Mom and I seemed to click with her immediately. We were also relieved when we learned about her many years of experience. Except for Gale, the aides were certified nurse aides (CNAs). It seemed that Katherine was a certified medical aide (CMA) and had a bit more experience. She had not changed a trach, but she had experience administering trach care and meds. I would still be responsible for organizing the meds, but it was nice to know that she could administer them when I wasn’t available. Gale and Michell had been willing to step up to help me when I had to leave town, but the responsibility caused them some stress.

I drove Katherine to the dialysis center so that Michell could show her around and orient her to the facility, and Michell had a nice surprise for me. She opened Dad’s gym bag and showed me several sample packets of Renvela. Even with the reduced doses that I gave Dad, it wasn’t enough to last until the end of the year, but it would help stabilize his phosphorous levels. I was relieved beyond words. After we got home, Michell showed Katherine around a little more before she left for the week.

My parents had a large angel trumpet plant in their courtyard, and it was in full bloom. Mom had told their neighbors, Jim and Sharon, about the plant and they stopped by to see it during happy hour. Having friends visit made our day feel almost normal.

I showed Katherine how to change the trach dressing and administer the meds. She had suctioned trach patients in the past, and she had no problem changing the trach dressing. I would be leaving tomorrow for a couple of days, and I felt very comfortable having Katherine in the house.

After dinner, we put Katherine to the real test and taught her how to play Oh Hell. She was a quick learner, but Mom won.

December 11. Today was Katherine’s first full day with Dad. At 4:45 A.M., she experienced the alarm of the Kangaroo pump when it ran out of tube feed. She woke up, added a couple of cans of Nepro, and then slept until 6:00 A.M. when Dad woke up.

Dad was still in bed when I entered the bedroom, and I was horrified to see him lying flat on the bed. I couldn’t believe that Michell and I had forgotten to tell Katherine that he had to maintain an angle of at least 30 degrees. Other than the problems of my omissions, she had been great with Dad and had no trouble handling the daily trach care activities.

Janet arrived at 11:00 A.M. for Dad’s occupational therapy session. Janet and Dad loved to verbally spar with each other and I couldn’t help but laugh as I overhead them from my office. As she was leaving, Janet told me that she was happy with his progress. Before Janet got out the door, Stephanie, the nurse, arrived.

When I had changed Dad’s trach, I noticed blood on it, which was unusual. I had taken a picture of it with my iPhone and asked Stephanie to give me her opinion about what might have caused it. She said that she wasn’t sure, but it could have been caused by the trach tube rubbing against the trachea. Because he seemed to be coughing a lot lately, I also asked her to check out his lungs. She seemed to think that he was OK.

By the time that Stephanie left, I had worked about five hours and needed to eat and then drive back to Houston. I was about an hour away from Temple when Katherine called me. It seemed that I had forgotten to show her how the oxygen tanks worked. My transfer of knowledge session with her had been slightly less than perfect.

I was so sleepy on the drive home that I think I fell asleep for a second. I often became drowsy during the last 20 miles of this drive and Stan had suggested that I eat M&Ms to stay awake. I wished that I had some now. When I arrived home, Stan was playing golf with his coworkers. Before he returned home, I left for the Glassell School of Art to work at the student art sale. When I got back home at 8:45 P.M., I finally had some time to visit with Stan and our cats before calling it a day.

Back in Temple, my parents and Katherine maintained their typical schedule. After dinner, they played cards and Dad won, which seemed to happen more often than not.

During my stay in Temple, the seasons had progressed from the early fall and Halloween to the late fall and Thanksgiving, and now we were getting ready for Christmas. I stayed in Houston long enough to get a haircut, run some errands, and pick up some clothes from home that were more suitable for the coming holidays. Stan left Houston for Temple at noon and by 2:00 P.M., approximately 26 hours after I had left my parents’ house, I was back on the road to Temple, where I arrived just in time for happy hour. It was the first time that Stan and I had been together with my parents in a couple of weeks.

https://www.mfah.org/visit/glassell-school/

Just when everything seemed to be going so well

Published on September 19, 2017 by mellowdee55Leave a comment

December 4, 2015. I left my home in Houston at 5:30 A.M. en route to my parents’ home. In Temple, at just about the same time, Dad was waking up, and Michell was administering his morning meds and trach care. Dad was in a good mood and was in the kitchen eating ice chips when I arrived at my parents’ house at 8:15 A.M.

Shortly after I arrived, I set up my laptop in my parents’ office. As I was logging on to work, Michell was assisting Dad as he walked 68 steps with his walker. I then heard her coach him through all of his physical, occupational, and speech therapy exercises.

After his workout, he wanted to rest for a few minutes, but within a few moments of his lying down, the nurse arrived at 10:45 A.M. Because this was the first time that this nurse had seen Dad, she gave him a thorough assessment and did not leave until 12:45 P.M.

After the nurse left, Dad had Michell prepare a cup of ice chips for him, and then he told me that we needed to talk. It seemed that during the 22 hours that I was away, he and Mom had made some decisions that affected me. In a nutshell, they wanted me to work from my bedroom upstairs so that Dad could use his computer. I balked at this idea, saying that I wasn’t going to spend my sleeping and waking hours in that room. My father had just purchased his Windows 8 HP computer before his surgery and had not bonded with it. I didn’t believe that after a six-month absence he would be ready to use it without some assistance from me. Also, because so many of my work meetings were online, I would prefer to hardwire my laptop to the modem, which was in the office, instead of working over Wi-Fi. We agreed to wait a little longer before I moved out of their office. I told him that I wouldn’t have any problem with them using Mom’s computer while I was working. Back in Houston, I worked in a cube environment. A little noise would not distract me.

I couldn’t believe how well Dad seemed to have rebounded following his debilitating bout of CDiff. He seemed to be feeling great and had Michell coach him through the second round of all of his exercises.

By 4:00 P.M., Dad was ready for a nap. Michell woke him almost an hour later, just before 5:00 P.M., when I logged off from work.

On most weekends, Stan drove to Temple to spend one or two days with us. Today, he flew to Detroit to spend a few days with his sister and her family. While the four of us in Temple were playing cards, I received a text from Stan stating that he had arrived safely in Detroit.

By 7:30 P.M., Dad had finished beating us at Oh Hell, and Michell and I started getting him ready for bed. Before his hospitalization, I had not realized how fast Dad could fall asleep. Tonight, like most nights, he was asleep before we left the room.

His sleep was short-lived, though, and he woke up at midnight, certain that it was time to get up. After Michell assured him that it was barely Saturday, he asked her to wake him at 3:30 A.M. for dialysis.

December 5. As instructed, Michell woke Dad at 3:30 A.M., and he was raring to get the day started. At 5:45 A.M., he was ready and waiting for the HOP. When the bus hadn’t arrived by 6:15 A.M., I called their dispatch office to check on the status of the bus. The dispatcher said that they were running late. Fifteen minutes later, I called them again and was told that the bus was en route and would arrive soon.

HOP paratransit patrons had an assigned bus to and from their destinations, but the aides were getting a bit more assertive, especially Michell. The trip home after dialysis was more successful than the morning ride because Michell was able to snag a ride on another bus. When they arrived at the house, I was a little assertive myself and insisted that Dad spend some time in his room hooked up to the oxygen concentrator and nebulizer. The nebulizer provided the moisture to his throat and lungs, which he needed after almost breathing dry air for almost seven hours. Also, we were running low on oxygen tanks, so I needed him to spend some time breathing the oxygen created from the concentrator.

During my lunch break, Mom and I went to HEB, the local grocery store, to purchase a little sacrificial poinsettia for my art. Before the week was up, I would cut it apart and use it to create a lumen print.

After logging off from work, I finally got around to changing Dad’s trach. What a fiasco. First, I put the trach collar on upside down. Fortunately, I hadn’t removed the old trach from his stoma. Michell helped me to correctly reattach the trach collar, but after pulling out the old trach, the Velcro from that trach collar got caught on the new trach collar. In most cases, I have the aides stand by for moral support. Today, I was grateful that Michell was there to provide actual assistance. If I had had this much trouble during my training, the respiratory therapist would not have cleared me to take care of Dad. Usually, I could switch out the trachs in less than 10 seconds. Today, I required twice that time. The old trach was a bit of a challenge to clean because it contained some hardened secretions, most likely caused by so much time spent breathing from the oxygen tanks. Although we kept the trach bibs wet, they did not provide nearly as much moisture as the nebulizer.

Dad didn’t do any exercises today because he was a little weak after his dialysis session. However, he spent a lot of time zipping around the house in his wheelchair.

We played cards again after dinner, and Dad trounced us. As we were administering his meds and trach care, Michell and I pleaded with him to sleep all night and wake up only for biological purposes.

December 6. Thankfully, Dad, and by extension, Michell and I, slept in until 6:30 A.M. Mom also had a good night’s sleep, so everyone was feeling refreshed and perky. By 8:00 A.M., Dad was dressed and ready for the day.

Mom and I left for church at 10:15 A.M. While at church, I gave several bundles of biscotti to many of the people who had prayed for Dad’s recovery and who had been the angels on our shoulders during the past few months. In appreciation of their pastoral care, I also presented the three pastors with lumen prints of fig leaves. During the summer months, their sermons had worked their way through the book of Genesis, so fig leaves seemed appropriate.

Shortly after Mom and I left for church, Michell coached Dad through his swallow, occupational, and physical therapy exercises. Before they were finished, Dad also walked another 68 feet with his walker.

Dad took a long nap during the afternoon and woke up at 3:00 P.M. The rest of the day was pretty quiet without Stan. It was a nice day outside, and the leaves were practically leaping off of the trees. I spent some time outdoors in the nice weather sweeping a few thousand leaves off of the driveway.

When Dad woke up from his nap, he wanted to put up Christmas lights. We had already pulled out boxes of Christmas lights to decorate the house. In other years, Dad would have used the step ladder to put up some of the lights, but step ladders were out of the question for him this year. Fortunately, Michell was a little over 6’ tall with an arm span to match. Under Dad’s direction, she and I started putting up some of the lights. We weren’t able to finish before happy hour and would try to finish tomorrow.

We had an early dinner, and by 7:45 P.M., Michell had beaten us at cards. Within 30 minutes, we had finished administering Dad’s meds and trach care, and he was sleeping. It had been a good day, and I hoped that I could start the work week after a good night’s sleep.

December 7. The day got off to a bad start when, at 2:00 A.M., the Kangaroo pump started alarming. Only a couple of things caused the pump to alarm. Usually, the danged thing woke me in the middle of the night when the bag was empty. It amazed me that it would wake me but not an aide who was sleeping right next to it. The pump would also alarm when the battery was low and needed a power source. After hearing the alarm sound off every 10 minutes for 30 minutes, I got up and went downstairs to find out why the pump was keeping me awake.

Evidently, each time that the pump alarmed, a message indicated that the battery was low, but the pump was plugged into the electrical outlet. Michell kept pressing the Continue button, which paused the alarm for 10 minutes. We couldn’t figure out what caused the problem, and so the madness continued. The high-pitched sound did not affect Dad, and he slept like a baby throughout the entire ordeal. At 3:00 A.M., we turned off the pump and Michell and I went back to bed. I didn’t get much sleep before my iPhone alarm woke me at 3:30 A.M. I was glad that I had prepared the coffee pot before I went to bed. I wasn’t able to do much more than push the start button.

At 8:00 A.M. sharp, I called American HomePatient and told them that I wanted a new pump. Timothy said that he’d deliver a new pump to us later in the morning. Just when I thought that the day couldn’t get any worse, Gale called to tell me that she would not be returning on Wednesday and she wasn’t sure if she’d ever return. Evidently, her sister-in-law, who had been ill, had taken a turn for the worse and would be starting hospice tomorrow. Not surprisingly, Gale’s family wanted her to care for her sister-in-law during this difficult time. I felt terrible on a couple of fronts. Of course, I felt bad for Gale’s family, but this turn of events put us in a bind. I suspected that Becky, the owner of One on One Personal Home Care Services, would have a difficult time replacing Gale this close to the holidays. Gale had also been on the rotation to work during Christmas.

While I tried to work, the tired Michell coached my well-rested father through his swallow and occupational therapy exercises. As bad as this day seemed to be going for Michell and me, Dad seemed to be having a great day, in spite of the fact that he had not received any nutrition since 3:00 A.M. When Brenda arrived at 12:15 P.M. for Dad’s physical therapy session, Dad wowed her with how well he was walking and by the way in which he executed his shower transfer.

Within a few minutes of Brenda’s departure, Tracy, the nurse, arrived. She said that Dad’s vitals were good and that he was in great shape. She was barely out of the house when Dad enlisted Michell to finish hanging the lights. I didn’t like him to ask the aides to do chores, but Michell was thrilled at the prospect of going outside.

While Michell and Dad were outside, the American HomePatient van arrived and Timothy delivered Dad’s new pump. Dad had now been off of the Nepro for the better part of 12 hours.

I texted Sue, the nurse practitioner at the dialysis center, and told her that I needed her to order a Modified Barium Swallow Study (MBSS) for Dad and that we were running very low on Renvela. Renvela was an expensive drug, and I had been administering less than the prescribed dosage. I had been monitoring Dad’s lab results to ensure that I was giving him enough to keep his phosphorous levels at the right level. Sue later called to tell me that she had ordered a refill of Renvela for Dad and that his MBSS was scheduled for Thursday, December 17, 10 days from today. I told her that I didn’t want Dad to have the swallow test on a dialysis day and asked if she could call the radiology department and change the date to December 18.

Since my call from Gale earlier today, it seemed like we had an elephant in the room, or perhaps in the house. During our game of Oh Hell, I asked Michell if she had heard from Becky today. Michell said that Becky had called her and had asked if she could extend her stay for another week while she looked for an aide to replace Gale. Michell said that she had told Becky that she’d stay longer if Becky could not find anybody to replace Gale, but that she hoped that she could.

Up until this time, Dad wasn’t aware of the situation with Gale, which had made him the most cheerful person in the house. Dad had finished beating us at cards by 7:45 P.M. and I had finished administering his meds and trach care by 8:15 P.M.

Progressing to a new mode of transportation

Published on September 12, 2017 by mellowdee55Leave a comment

November 30, 2015. I woke up at 3:30 A.M., and Dad and Gale woke about two hours later. Dad’s strength had returned to his pre-CDiff levels, and he was in great spirits. Today he would be assessed for an additional 60 days of home care under Medicare. He had been scheduled for this assessment last week but it was canceled when we were temporarily discharged from home care.

The parade of provider assessments started with Kathleen, the physical therapist, at 10:30 A.M. She was followed at 11:30 A.M. by Janet, the occupational therapist, and at 1:30 P.M. by Stephanie, the nurse. During Kathleen’s visit, she asked how Dad was being transported to dialysis. We told her that we had wanted to use the HOP, but were still using the Scott & White wheel chair service. On October 26, we had hand-delivered our application in hopes that we could expedite the process. We were told at that time that the approval process might take as long as three weeks. We had now waited more than a month. Being able to use the HOP’s paratransit service would save us $114 per week, and we were anxious to take advantage of the cost savings. We had tried calling, but could not get through to a human. Kathleen was familiar with the HOP organization and immediately used a seemingly secret number to phone the office to check on Dad’s status. During her call, she learned that Dad had been approved on November 10, more than two weeks ago, but somehow his paperwork was misplaced and not mailed to us. We could either wait to have them mail it to us or we could stop by the office later today to pick up the paperwork.

During my lunch break, Mom and I drove to the HOP office to retrieve Dad’s ID card and a booklet of regulations. We were told that we would have to call the dispatch office to schedule Dad’s pickup times. When we returned home, Mom called the HOP dispatch office, and I happily called the Scott & White EMS wheelchair van service and canceled Dad’s pickups. Transitioning to the public transit system seemed like a huge milestone.

Shortly after Mom and I returned home from the HOP office, our dear friend Mike called to tell us that he would be passing through Temple en route to Houston from Wisconsin. I had not seen Mike since May 15, 2015, the night that Mom had her stroke. Mike is married to Rhoda, who had come to Houston to help me the day after Mom had her stroke. My parents and I looked forward to seeing him again.

At 2:00 P.M., Kristen arrived for her regularly-scheduled swallow therapy session with Dad. At the end of Dad’s session, she said that Dad was “amazing” and that she wanted me to schedule an appointment for a “cookie swallow” test, otherwise known as a modified barium swallow study (MBSS). She also said that next week Dad would advance from ice chips to applesauce. I was excited, yet scared to death. For so long we had made no progress, and some doctors said that he’d never swallow again. Now, after just a couple of weeks with a speech pathologist, he was about to make a remarkable advancement. On the other hand, after just a couple of weeks working with a speech pathologist, he was going to swallow something that could potentially set him back six months. To say the least, my emotions were all over the map. It didn’t help matters any that my father seemed to have a cavalier attitude about what was happening. He seemed to worry more about tomorrow’s bus ride than he did about protecting his airway.

Kristen left at 4:00 P.M., and after a day of visitors and therapy, Dad was ready for a nap. An hour later, he was awake and ready for happy hour and ice chips. By 6:30 P.M., happy hour and dinner were over, and we were ready for a cutthroat game of cards. Gale was on a roll and won again, although not as handily as she had the previous night.

Our bedtime routine started at 7:30 P.M., and Dad was in bed and ready for trach care by 8:00 P.M. Today, it felt like we were finally back in the groove and back on the road to recovery.

December 1. Dad did not sleep well. He was worried about today’s bus ride to dialysis. At 3:15 A.M., he was the first one awake and was eager to get up. At 3:30 A.M., he asked Gale for the booklet of rules and regulations. He had read that booklet so many times that I was certain that he had it memorized. I’d bet money that he had read the guidelines and rules more than any other HOP rider, and he’d been in possession of it for less than 24 hours.

When I came downstairs at 3:45 A.M., I was a little surprised to see him up. I was even more surprised when I returned from the kitchen 40 minutes later with a cup of coffee and saw that he was dressed and ready to go to dialysis. Needless to say, the very tired Gale was not ready. At 5:00 A.M., the parade of surprises continued when the phone rang. The dispatcher from the HOP called to let us know that the bus was en route to our house and would arrive in a few minutes. When Mom had scheduled his pickup time, she gave them the time that the bus needed to arrive at our house, which was 6:15 A.M. The scheduler interpreted that time as the time that Dad needed to arrive at the dialysis center. After we resolved that misunderstanding, the dispatcher said that the bus would arrive at 6:00 A.M. At 5:50 A.M., they arrived and pulled into my parents’ circular driveway. Mom and I watched as the wheelchair lift was lowered. The driver then wheeled Dad into the bus and ensured that the wheelchair was restrained. After Gale entered the bus, Dad paid his fare of $2, and they were off.

While Dad and Gale were at dialysis, Mom made a cake for Gale. Today was her birthday, and we wanted to celebrate it with her. Our friend Mike arrived a few minutes after 11:00 A.M. I had hoped that Dad would arrive home shortly after his session ended, but the bus did not arrive home until 12:30 P.M. Although Mike needed to be on his way to Houston, he stayed until 1:00 P.M. so that he could visit with Dad.

Shortly after Mike left, Dad was ready for a nap, and he slept until it was time for him to swallow some ice chips. As he wheeled himself from his room, he stopped by the office to let me know that I should stop for the day because it was time for happy hour.

After dinner, we presented Gale with her cake, sang to her, and gave her some cheesy gifts. Had she won at cards, her day would have been perfect, but it was not to be. Tonight was my night to win.

By 8:00 P.M., Dad was in bed and I had administered his meds and trach care. Now that he had had one successful day of public transportation under his belt, I hoped that he would sleep well.

December 2. We all had a good night’s sleep. I slept through my alarm and didn’t wake up until 4:30 A.M., and Dad slept until 6:00 A.M., although he wasn’t ready to leap out of bed even then. He was still in bed when I took a break at 7:00 A.M. to administer his meds and trach care. Dad pointed to his various tubes said that he’d be glad when he could get rid of “all of these wires.” I told him that he was in control of when the tubes would be removed. After he rolled his eyes at me, I reiterated the importance of his physical, occupational, and swallow therapy exercises, which he hated doing. After whistling in the wind for a few minutes, I returned to work and let Gale help him to get ready for the day.

An hour or so later, I heard Gale helping him with his swallowing exercises. He and Mom then ran through the exercises that Janet, the occupational therapist, had left for him.

Michell arrived at 11:20 A.M. and met with Gale so that she could catch up on the events of the past week and learn about the bus service. I think that Michell was relieved to hear that the week had been boring in comparison to her drama-week with us. After Gale left, I gave Michell a hug and told her how grateful we were that she had decided to return.

Gale had barely pulled out of the driveway when Brenda arrived for Dad’s physical therapy session. Brenda put him through his paces, having him walk 68 feet, march in place, stand on one foot, and stand on his toes. Dad was exhausted when she left and was ready for a nap. However, instead of sleeping until he woke up himself, he instructed Michell to wake him by 2:00 P.M.

A couple of hours after waking from his nap, Dad wanted Michell to help him with some of his exercises. I didn’t know if I had inspired him to exercise or if he was more interested in exercise because he was feeling better. The reason didn’t matter to me, as long as he exercised.

After happy hour and dinner, we played cards. Michell was tonight’s winner. By 8:00 P.M., Dad was in bed and practically asleep.

December 3. Dad was up at his regular time for a dialysis day and was ready when the HOP paratransit bus arrived at 5:40 A.M., which meant that Dad would be at dialysis almost an hour before his scheduled chair time. Ideally, he would be home an hour earlier, too.

I worked for about six hours and then packed up my laptop and drove back to Houston. Tonight was the last night of the semester for my photography class. I had missed most of the semester, and I wanted to attend the final critique. Not only did this class represent some remnant of normalcy for me, I wanted to share some of the holiday biscotti that I had baked.

Dad was finished with dialysis at 10:30 A.M. and was on the bus by 11:00 A.M., but because he was the last stop, he and Michell didn’t arrive home until almost 1:00 P.M. By 1:45 P.M., he was ready for a nap. While I was in Houston, Michell would assume responsibility for the trach care and meds. As has been the case with Gale, I had laid out all of the instructions and refilled the pill dispenser. I would be gone for less than 24 hours, so Michell and I both felt that she would get along fine without me.

During happy hour, Michell prepared more ice chips for Dad. After dinner, the three of them played Oh Hell, and Michell won again. After administering the meds and trach care, Michell had Dad ready for bed by 8:00 P.M. and he was asleep before she was ready for bed.

Unfortunately, Dad didn’t stay asleep very long, and by 11:50 P.M. he was fast awake. When Michell asked him why, he told her that he was thinking about problems. Fortunately for both of them, he drifted back to sleep within 30 minutes.