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.

 

We were ready to leave 2015 behind

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Two bad colds, and a partridge in a pear tree

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.

xmasOrnament1While 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.

2015_xmas_013After 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.

xmasOrnament2After 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.

xmasOrnament1When 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.

xmasOrnament2He 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%.

xmasOrnament1December 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.

xmasOrnament2By 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.

xmasOrnament1After 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.

2015_xmas_24

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

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.

VisionsCross1My 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.

VisionsCross3When 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.

VisionsCross1We 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.

VisionsCross2Michell 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.

VisionsCross2After 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.

VisionsCross3December 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.

VisionsCross1Dianne 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.

VisionsCross3Dad’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.

 

Why did it have to be a snake?

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.

spidersSnakesCrossWhen 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.

spidersSnakesCrossMom 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.

spidersSnakesCrossDuring 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.

spidersSnakesCrossToday, 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.

spidersSnakesCrossWhile 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.

spidersSnakesCrossDecember 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.

spidersSnakesCrossDad 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.

spidersSnakesCrossWhen 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.

IMG_1344Today, 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.

spidersSnakesCrossThe 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.

spidersSnakesCrossIt 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

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.

kangarooPumpAs 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.

unhappycrossAt 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.

happycrossBecky 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.

unhappycrossAfter 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.

unhappycrossAt 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.

happycrossDecember 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.

unhappycrossMy 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.

happycrossWhen 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.

happycrossShortly 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.

happycrossKristen 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.

happycrossFrom 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.

happycrossKatherine 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.

trumpetPlantMy 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.

unhappycrossDad 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.

unhappycrossBy 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.

happycrossDuring 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/

 

 

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.