Finally! A proper toilet and a trip to the barber

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

img_1421By 4:30 A.M., with some assistance from Dianne, Dad had washed his face, brushed his longish hair, and was dressed for the day. Keeping with his normal routine, he wheeled himself to the kitchen and read some of the newspaper while Mom prepared his breakfast of Cream of Wheat with honey and a small bowl of peaches and pears. He was finished with breakfast and ready to go long before the HOP arrived at 6:00 A.M.

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

shave1Now that Dad could transfer in and out of the SUV, Mom scheduled appointments with the hearing aid center and the dermatologist. She told me that Dad also wanted to see the barber on Thursday. He was usually a little weak on Thursdays because of dialysis, so strength-wise, Wednesday would have been a better day, but his Wednesday dance card was already filled with nurse and therapist appointments.

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

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

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

shave2After our nightly game of cards, Dianne and I were finished with Dad’s nightly meds and trach care by 8:15 P.M., and by 8:30 P.M., he was sleeping. An hour later, he started coughing, but Dianne was able to get him to suction himself, and he was soon sleeping again.

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

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

shave3While getting dressed, Dad’s dialysis catheter dressing fell off. Unbelievably, Dianne picked it up off of the floor and put it back over his dialysis ports. When I heard what had happened, I had her remove the soiled dressing, and I called the dialysis lab and spoke with Dad’s nurse. The nurse told me that he could stop by the dialysis lab at any time today to have the dressing replaced.

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

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

shave1After dinner, I told Mom that I needed to prepare either tonight or tomorrow for my trip home on Friday. She said that I should make my preparations tonight, which meant that she was canceling tonight’s card game. My parents have a high-efficiency washing machine, and like most of these machines, they’re prone to mold. After using it, I mentioned to her that I had noticed some mold on the seals. In response, she told me that she didn’t like my attitude. I was becoming more eager to leave here with every passing hour.

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

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

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

shave2I had logged on to work around the time that Dad woke up, and my morning was full of scheduled meetings. Michell and Dad arrived home from dialysis around 11:30 A.M. and had already eaten lunch by the time that I was free for lunch.

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

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

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

shave3Because of his coughing spells today, I decided to resume the saline breathing treatments for at least for a day or two.  His secretions seemed to contain some “solids,” which was somewhat disturbing. After the breathing treatment, he started coughing hard again, blowing off the red cap. The way that that red cap flew off of the trach reminded me of a cork flying off of a champagne bottle. After his coughing spell, his oxygen saturation level was 99%, higher than it had been since the day that he was red-capped, so it seemed that his cough had been productive.

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

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

shave1Mom and I talked about finding another primary care physician for Dad—one that was part of the Scott & White network. We spent some time online looking for physicians and called the office of our neighbor and doctor, Barbara, to see if she was still taking new patients, but we had to leave a message. We had not received a return call or email by the time that I left for Houston.

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

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

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

shave2I arrived home shortly before 4:30 P.M. When I called my mother to tell her that I had arrived, she told me about the events of the afternoon. I spoke briefly with Michell and had her give Dad a Zofran pill for his nausea and cut back on the rate of his tube feed. We had increased the rate from 55 ml/hour to 130 ml/hour. The dietitian at the gastroenterologist’s office had assured me that this rate shouldn’t cause a problem, but all evidence pointed to the contrary. He needed the Nepro to supplement his dietary intake, but he wouldn’t get it if he kept vomiting.

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

 

 

 

Checking off another milestone: successful car transfer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

everflo-oxygen-concentrator-5-liter-b73
Condenser

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

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

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

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

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

 

Today, a shower. Tomorrow, a proper toilet?

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.

shower3During 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.

shower2We 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.

shower1By 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.

shower2Moments 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.

shower3We 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.

shower1During 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 100th day since Dad’s discharge from the CCH and on home care.

shower2January 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.

shower3Shortly 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

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.

rcap3At 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.

rcap2Dad 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.

rcap3After 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.

rcap2Dad 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.

rcap3Shortly 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.

rcap2As 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.

rcap3I 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.

redCap2When 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.

rcap1The 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.

rcap1After 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.

 

Progressing to a new mode of transportation

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.

medicalCrossThe 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.

wheelchairShortly 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.

walkerGale 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.

 

A relative calm after the storm

November 26, 2015. It was Thanksgiving Day, and I was feeling grateful. I woke up at 4:30 A.M., which might seem too early for a non-dialysis holiday day, but I wanted to work a couple of hours to catch up after all of the distractions of the previous two days. Among other things, I was grateful to have a job and supportive management, which enabled me to keep working while my mother and I took care of my father.

cloudStormy03 copyDad and Gale slept until 6:45 A.M. Along with the water that we normally used when administering his meds, during the day, I planned to administer two additional cups of water into Dad’s G-tube to help avoid any more issues with dehydration.

My husband, Stan, arrived from Houston around 10:00 A.M. and found Mom and me in the kitchen, and Dad and Gale outside on the patio enjoying the seasonably nice weather. On any other Thanksgiving Day, you’d find us preparing the turkey and traditional side dishes to serve with our turkey, but not this year. Instead, this year we would set aside our family food traditions and consume a simple dinner of comfort food. I could not bear the thought of filling the house with traditional aromas—aromas of food that Dad could not enjoy.

cloudStormy02Not all of our traditions fell by the wayside, however. Dad and Stan still enjoyed the traditional football games and spent many hours visiting. I gave Dad some ice chips and encouraged him to practice swallowing. Because watching football could be so exhausting, Stan and Dad recharged themselves by napping after lunch. At 4:00 P.M., Gale woke Dad and I woke Stan. Stan and I went to Walgreens to purchase some medical supplies, and Gale tended to Dad’s wrist, which I had accidentally wounded a couple of days earlier.

During our happy hour, we shared thoughts about what we were thankful for during the year. For me, it was Dad, Stan, Mom, and Gale. I was also grateful for my friend Rhoda, who stayed with me when both of my parents were hospitalized, and my cousin Chris, who stayed with us for a week in June. I was also very grateful for Sue, our friend and nurse practitioner who rescued us from a dire situation just yesterday. And, finally, I was also thankful for Drs. Issac and Smith and many of the wonderful nurses, who treated Dad like their parent.

During our non-traditional spaghetti dinner, Dad retired to his room. After dinner, we played Oh Hell, and I won. At 8:30 P.M., we started preparing Dad for bed by administering his nightly meds and trach care.

cloudSunNovember 27. Dad had a very restful night, which meant that we all slept well. He called for the urinal around 1:00 A.M., and then slept until Gale woke him at 4:00 A.M. Because of the Thanksgiving holiday, the Thursday dialysis sessions had been rescheduled to Friday. The EMS dispatch office called a couple of times to adjust our pickup time and finally settled on 5:45 A.M. Before Dad and Gale were picked up, Gale told me that she thought that the Flagyl seemed to be addressing the effects of Dad’s CDiff.

At 11:03 A.M., Gale called me from the wheelchair van to let me know that she and Dad had been able to get a ride back home immediately after Dad’s dialysis session. Shortly after they arrived home, Dad retired to the bedroom for a nap. Before he drifted off to sleep, I administered his meds and trach care. Gale started complaining about hip pain and said that she was taking Advil to reduce the pain. She mentioned that the last time that her hip went out on her, she was out of commission for three weeks.

cloudStormy03 copyAt this time I didn’t know if Michell would be returning, and the thought of losing Gale too was almost more than I could handle. I indulged myself to a little pity party about not being able to leave for a couple of days of respite if I lost both of my aides. I felt conflicted because I was determined to see my father through this ordeal, yet I missed my life in Houston and wanted to go home, if only for a day or two.

Because of all of the folderol earlier this week, Dad’s assessment meetings were pushed from the day before Thanksgiving to Monday. Dad was supposed to see Dr. Pfanner again on Monday. Unfortunately, the earliest date available with the gastroenterologist was December 14. I was anxious to get on with Dad’s recovery and hated that we had to wait two more weeks for a follow-up visit with the doctor.

Dad slept until after 4:00 P.M. and didn’t join us for happy hour until almost 6:00 P.M. The five of us had a nice visit, and then Dad read the newspaper in his room while we ate. After dinner we played Oh Hell. Stan won, beating Dad by only a few points. Afterward, Stan and Dad talked about portable screwdrivers, and then Gale started getting him ready for bed.

cloudStormy02While I administered the trach care, Gale prepared Dad’s nighttime meds. When we were finished preparing Dad for bed, Gale left Dad’s room and went to her room to shower. Shortly after she left the room, Dad became nauseated and started vomiting. Fortunately, Mom was nearby and was able to assist me. I quickly moved Dad to the upright position and retrieved our handy plastic basin. After Gale returned, I grabbed the documentation for the Flagyl and saw that one of the side effects of this medication was nausea and vomiting. Awesome. Fortunately, Sue had refilled Dad’s prescription for Zofran, which I immediately crushed and injected into his G-tube. To err on the side of caution, I decided to add Zofran to his daily course of meds until he had finished taking the Flagyl. Vomiting unnerved me because I was so afraid that he might aspirate. To ensure that he was OK, Gale and I sat with him until 10:30 P.M. I’m sure that it wasn’t intentional on his part, but it seemed that Dad never vomited while an aide was with me in the room.

cloudSunNovember 28. I didn’t wake up until 7:30 A.M., which meant that I slept for a decadent period of eight hours. When I ventured downstairs, Mom and Gale were in the kitchen drinking coffee. Gale had been up since 5:30 A.M. and Mom had been up since 6:00 A.M. Surprisingly, Dad was still sleeping. When we heard him stirring shortly before 8:30 A.M., Gale and I administered his morning meds and trach care. As Gale assisted him into his wheelchair, she said that she could tell that he had regained much of his strength, that he seemed a lot stronger. It still took Dad a couple of hours to get up and get ready to face the day, but it was a good day for him.

When he tired of watching me bake, Dad and Stan worked together to assemble a piece of furniture for me. The longer that I lived here, the more my clothes and accessories migrated from Houston. My parents’ vista room, located on the second floor and which I used as a bedroom, had a nice closet but no dresser. Stan and I had found a small set of shelves and coordinating boxes at Lowe’s that would serve my purpose and that would be useful for guests after I eventually moved back home. After this accomplishment, Dad took a nap, while Mom, Stan, and I ate lunch.

2015_nov_005During happy hour, I was able to shoot a group photo of the family and Gale. I don’t recall what prompted the comment, but my mother said that when I was in college, I forced her to have her ears pierced. This comment surprised and concerned me. Anyone who knew my mother would question my ability (or my father’s) to force her to do anything against her will.

 

After dinner, we played cards again and everyone lost at least one hand, except Gale. This might have been the happiest that I had ever seen her as she ended the night the big winner of Oh Hell. Today had been a very good day, and after the events of this week, I felt like we deserved a good day. Maybe we could score two good days in a row and get Dad’s recovery back on track.

cloudSunNovember 29. Although it was Sunday, because of the holiday schedule at the dialysis center, today was a dialysis day for Dad. He seemed practically perky this morning and stood up from the bed by himself. Gale and I were in his room when he stood up, and we exchanged concerned glances. Standing up without having one of us nearby to act as a spotter was dangerous and a problem. However, we were so glad to see that he was getting stronger, we were happy to allow this transgression this one time. He grunted at us when Gale and I gently reminded him that one of us needed to be nearby when he stood up.

img_1328When the wheelchair van picked up Dad at 5:45 A.M., I followed the van to the dialysis center so that I could talk with the charge nurse about his fluid removal. Sue had assured me that they would restrict the amount of fluid that they removed, but because this was a holiday weekend and a Sunday, I wanted to ensure that the well-meaning skeleton staff would follow those orders. I would not have him dehydrated again during dialysis. The charge nurse acknowledged my concerns and said that she would speak to Dad’s nurse.

Dad returned from dialysis while Mom and I were attending church. He and Stan played a couple of hands of cribbage, and Dad won, which was not unusual.

cloudStormy03 copyWhile Stan, Mom, Gale, and I ate lunch, Dad retired to his room for a nap and was still sleeping when Stan left for our home in Houston. Dad woke up shortly before 4:00 P.M., which seemed like a good time for me to change his trach. I was finished and had cleaned up after myself well before happy hour. Although we were thrilled to have Dad swallowing ice chips, he would have preferred something a bit warmer to eat during happy hour.

After dinner, the four of us played Oh Hell, and I was tonight’s winner. We finished playing cards shortly after 7:40 P.M. and by 8:00 P.M. Gale and I had administered his nightly meds and trach care, and he was drifting off to sleep.

cloudSunFour hours later, at midnight, Dad woke up, ready to take on the new day. Gale helped him out of bed and into the wheelchair, but by 12:30 A.M. he was ready to return to bed where he slept peacefully for another six hours.

We had been able to score a couple of good days in a row.

 

 

The diagnosis

November 21, 2015. Despite the howling winds that blew through town overnight, I slept well, waking up only a couple of times when I heard Dad coughing. I got up early and woke Dad and Michell shortly after 4:00 A.M. Dad woke up slowly and had another difficult morning. I administered another dose of Imodium in his G-tube, along with his morning dose of Midodrine, which would help raise his blood pressure during dialysis. Michell and I also had the fun task of collecting a stool specimen that we had to drop off at the dialysis center.

diagnsisLetter-dWhen Michell and Dad were picked up by the EMS wheelchair van service, Stan and I drove to the dialysis center. I had been very upset that they had removed 2,500 ml from Dad on Thursday, and I intended to express my concern to the charge nurse. For each 1,000 ml removed, a dialysis patient loses 1 kg. After I had explained Dad’s situation, she said that they would just clean his blood today and not remove any fluid from him.

I remained at the dialysis center with Dad until he was weighed, which would determine his wet weight. Instead of gaining weight since his last session, which is what typically happens with dialysis patients, he had lost weight. He now weighed 128 pounds, five pounds less than his dry weight on Friday. Although two dietitians were now monitoring his nutrition, I was very concerned about his weight. I know that Michell was concerned when she learned how much the nurse planned to remove, she didn’t feel that she was qualified or entitled to question their judgment.

diagnsisLetter-iAfter I saw Dad weighed, Stan and I left Dad and Michell at the dialysis center so that we could run several errands before Dad returned home. Everything worked in our favor, and we were home by 10:30 A.M. As it turned out, Stan and I didn’t have to rush. Dad and Michell had to wait for the van and didn’t return home until after noon.

As soon as he got home, I administered Dad’s trach care and meds. Following dialysis, Dad usually was ready for a nap, but not today. During the storm last night, we had wind gusts up to 40 MPH that ushered in a cold front, and we lost a roof shingle. As soon as I was finished with Dad, he was ready to discuss with Stan how to replace the shingle.

diagnsisLetter-aShortly before 2:00 P.M., Dad took a long nap on the couch while we were in the living room because he didn’t want to be away from us. I think that he thought that sleeping on the couch would ensure that he didn’t miss happy hour, but he slept through it. Dozing on the couch might not seem like a big deal, but it was another first for him in his post-hospital life. We had to rely on the oxygen tank and trach bib because we couldn’t bring the oxygen concentrator and nebulizer to the living room, but he was able to receive Nepro during his nap. He slept for about four hours, and we woke him when we finished dinner.

We played cards again, and Stan was tonight’s winner. Shortly after 8:30 P.M., we started our bedtime routine, and by 9:10 P.M., I was heading upstairs. I had been concerned that, after sleeping for so many hours today, Dad wouldn’t be able to sleep, but he was snoozing before I left the room. Since lunchtime, I had been feeling like I was coming down with a cold, so I took some Nyquil before bed. Even if it didn’t help fend off a cold, it would help me sleep.

diagnsisLetter-gAt 10:30 P.M., the baby monitor station in our room started alarming. After quickly putting on my glasses, I could read the message on the display that indicated that our station was unlinked from the base station. As I tried to turn on the light, I discovered that the power was out again, which was why the monitor was unlinked. I called the power company, whose phone number was now stored on my iPhone, and listened to the recorded message stating that the power would be restored by12:30 A.M. I went downstairs and checked on Dad and Michell. Although the baby monitor alarm was also sounding in their room, it was the silence of the oxygen concentrator that first woke Michell. When I entered the room, she was setting up an oxygen tank next to Dad’s bed. I called the power company again, and the recording had been changed and now stated that they didn’t know when the power would be restored. The power came back on at 3:30 A.M. as Michell was replacing Dad’s empty oxygen tank.

November 22. After the interrupted night’s sleep, I finally woke up when I heard Michell telling Dad that it was 6:00 A.M. When I entered the master bedroom, my first thought was that Dad seemed as sleepy as I felt. However, his movement seemed unnaturally slow. Right after he finished washing his face and brushing his teeth, Michell checked his oxygen saturation level, and it was 74%, a severely low level. I then noticed that I didn’t hear the soft hissing sound from the oxygen tank that I heard when the oxygen was flowing. When I checked the tank, the valve was in was in the off position, which surprised Michell. She was sure that it had been on and thought that Dad must have leaned against the key and turned it off. We quickly put him back on the bed, removed his speaking valve and gave him unobstructed oxygen from the concentrator and nebulizer. After 30 minutes, I still wasn’t happy with his oxygen levels, so to rule out any chance of an obstructed airway, I changed out his trach. For the past couple of weeks, we had been slowly reducing the amount of oxygen that we administered from the oxygen tanks and his oxygen saturation levels had remained high. I now decided to increase his oxygen level back to two liters, which is where it was when he was discharged from the CCH almost two months ago.

diagnsisLetter-nBy 8:00 A.M., Dad was back in the wheelchair and was reading the Sunday newspaper. When Mom and I left for church, he and Stan were playing cribbage. After a couple of games of cribbage, Dad wanted to lie down and rest. According to Michell, he fell asleep as soon as his head hit the pillow. Usually, he liked for us to wake him before Stan left for Houston, but today he asked that we let him sleep.

We finally woke Dad and helped him out of bed shortly after 3:00 P.M. He was up for the rest of the evening, and Michell was able to get him to run through some of his swallow-therapy exercises. Dad rested in his room again while we ate dinner, and he was ready to play cards when we were finished eating. By 8:20 P.M., we were finished with cards and starting our nighttime routine. Less than 25 minutes later, we had finished administering the meds and trach care, and Dad was sound asleep.

diagnsisLetter-oNovember 23. Dad was very slow in waking up this morning. When I heard him and Michell talking, I took a break from work to administer his morning meds and trach care. Tracy, one of our RNs, called around 9:00 A.M.to see if we could be her first stop this morning. I was very low on the Mepilex dressings that American HomePatient didn’t provide and asked Tracy if she could bring me a few to tide me over until I could order more from Amazon. She said that she would stop by the office and pick up a couple for me. I was very fond of Tracy. She was a wonderful nurse and the mother of a special needs child. She was one of my favorite nurses and a very caring person. She arrived at my parents’ home at 10:00 A.M. with my requested dressing in hand. After her brief examination of Dad, she said that his bed sore was practically healed. With the way that Dad had been feeling, I didn’t want to take him back to the wound care doctor, which would most likely take the entire afternoon. She said that I could safely cancel his appointment with wound care today. Also, she didn’t think that I would need any more of the expensive Mepilex dressings. I happily accepted the good news and canceled the appointment with the doctor and the EMS wheelchair van service.

diagnsisLetter-sWhile Tracy was visiting, Dad spent the entire time either sitting or lying on the bed, so she didn’t see how weak he had become. Shortly before Tracy arrived, Michell had had to hold up Dad to keep him from falling when he was trying to get dressed. I hoped that we would hear something soon from Dr. Pfanner’s office.

I contacted Kathleen, the physical therapist, to see if she could come over today to take care of Dad’s 60-day assessment for Medicare. As part of the assessment, the Scott & White Home Care providers would recommend an additional 60 days of home care. Unfortunately, because the health care providers can’t perform their assessments more than five days before the assessment due date, which was this coming Saturday, the earliest that she could stop by would be Tuesday, which was a dialysis day. According to Kathleen, the therapists and the nurse would arrive on Wednesday to perform their assessments. After a couple of phone calls, she and I decided that to avoid a massive traffic jam of providers, she would conduct her assessment on Thanksgiving Day. I was impressed how everyone was willing to work on and around one of the biggest US holidays of the year. For us, every day had become basically the same, but these people all had families and lives outside of work. My only concern had to do with Dad’s diminishing strength and that he might not be able to exhibit progress during his assessments.

diagnsisLetter-iShortly before noon, Michell helped Dad with some of the exercises prescribed by the occupational therapist and then she, Mom, and I helped him walk from the kitchen to the bedroom.

Kristen arrived at 2:15 P.M. for Dad’s speech therapy session, but he was sleeping. I had thought that we would not see any of the therapists until next week, but Kristen said that she was not part of Kathleen’s team, plus, she had just started treating Dad. To enable Dad time to wake up, she said that she would visit with her next patient and return in about 90 minutes. She returned shortly before 4:00 P.M., and she and Dad had a good session.

I worked only a half day today and ended the day around the time that Dad woke up. I retired to the kitchen and baked a couple of batches of biscotti. I needed to get my annual baking underway, but I felt guilty for baking something that Dad liked but could not eat. It didn’t help that the aroma of the biscotti wafted throughout the house.

Late in the day, Dr. Pfanner’s nurse called and said that Dad tested positive for CDiff. She and I discussed some antibiotics that he could take for it, but she would need to consult with the doctor and get back to me. Evidently, Dad’s G-tube was causing them to rethink which medication to prescribe. It was ironic that this infection was probably caused by Dad’s long-time usage of antibiotics, yet it would take another antibiotic to get rid of it. It was terrible that he had contracted this infection, but at least we knew why he had had this terrible diarrhea and that he would soon have medication to treat it.

diagnsisLetter-sI would need to leave town again for a day or two in early December. I had asked Michell if she would consider administering trach care and the meds while I was gone. I told her that Gale had performed these same tasks while I was gone a couple of weeks earlier. Michell had worked in nursing homes before she took a position with One On One Personal Homecare Services. In nursing homes, she would not have been permitted to perform either of these tasks. The rules of home care were at the discretion of the home care providers, namely me. I encouraged her to speak with Gale to see how she had managed. Truth be told, Michell had already performed tasks here that would have been off limits for her in a nursing home. Fortunately, Michell said that she would agree to be trained by me and give me her final decision after she had a chance to speak with Gale. During our nighttime routine, I showed her how to administer the trach care. She was nervous, and it would take a bit more practice with her, but I had to give her credit; I don’t know if I would have been willing to assume responsibility for the trach care had I been in her shoes.