health care – Page 7 – Tale of Two Parents

Not all aides are created equal

Published on September 26, 2017 by mellowdee55Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just when everything seemed to be going so well

Published on September 19, 2017 by mellowdee55Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Progressing to a new mode of transportation

Published on September 12, 2017 by mellowdee55Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A relative calm after the storm

Published on September 5, 2017 by mellowdee55Leave a comment

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.

Dad 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.

Not 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.

November 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.

At 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.

While 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.

November 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.

During 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.

November 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.

When 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.

While 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.

Four 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.

From flying monkeys to angels

Published on August 29, 2017 by mellowdee553 Comments

November 25, 2015. After not getting to bed until 2:00 A.M., the morning seemed to come very soon. I had worked for about an hour when I heard Dad and Michell waking up at 6:00 A.M. I took a break from work to administer Dad’s meds and trach care. My plan had been to work half days this week and then bake for the remainder of the day.

I was worried about the events from the previous night, so at 8:00 A.M., I called the Bell county sheriff’s office to see who had requested our visit from Deputy Blankemeier. After a couple of minutes, a very pleasant woman at the sheriff’s office told me that Adult Protective Services (APS) had placed the call. As I hung up the phone, I called for my mother to tell her what I had learned and that I was fairly certain that we were up the proverbial creek.

Only a few minutes later the phone rang, and it was Tracy, our nurse. Instead of calling to see what time she could stop by, she was calling to tell me that because we signed the AMA last night, Dad had been discharged from Home Care and that all of the appointments for the day were canceled. I felt physically ill, and it seemed as if my peripheral vision was closing in. Being discharged from home care meant that Medicare would no longer be paying for all of the equipment in our house and that all of Dad’s therapies would cease. The financial and health implications were enormous, and I felt guilty for putting us in this position. I should not have taken Dad to the hospital, regardless of what Dr. Pfanner’s nurse had said. I asked Tracy how we could get Dad reinstated. She told me that the only way that we could get readmitted was to have a doctor refer us again. I asked her if it had to be the same doctor, because we hadn’t seen the CCH doctors in two months. She checked and called back, saying that any doctor would do.

I indulged myself to a mini panic attack, and then I remembered our friend Sue, the nurse practitioner at the dialysis center. It was 8:30 A.M., so I called her cell phone. Not knowing that Sue was a night owl, my phone call woke her. Because I had texted her last night from the hospital, she knew that Dad had been in the emergency room. When I told her about our current situation, she came wide awake and said that she and Dr. Issac would refer us. She said that she could not make the referral, but she could write the order and Dr. Issac would sign it. The referral seemed to move from Sue to the Home Care office at warp speed. In a matter of minutes, Tracy called and said that she would arrive shortly to readmit Dad to Home Care. She arrived a few minutes after 9:00 A.M., just 30 minutes after my call to Sue.

Feeling like I could exhale again, I returned to work. Within 20 minutes, the doorbell rang, which was not unusual with all of the deliveries of medical supplies. A couple of minutes later, my mother entered the office and told me that an agent from Adult Protective Services was here to investigate our case. I took a deep breath and went to the family room to meet Brandi. She and I were quickly joined by Mom, Michell, and Dad. With a little assistance from Michell, Dad moved his wheelchair next to my chair. Brandi told us that although charges are made anonymously to APS, we could probably figure out who claimed that we were jeopardizing my father’s well being by removing him from medical care against best medical advice.

Before I responded to the charges, I felt that I needed to establish my credibility as someone who could be entrusted with the care of my father. I told her that I was very familiar with Child Protective Services (CPS), a similar state organization. Not only did I have friends who worked at CPS, but my husband and I had also been licensed by the State of Texas through CPS to adopt and foster children. I then proceeded to respond to the charges by listing all of the stellar medical advice that we had received from Scott & White, beginning in late April, and explained that because of our experiences, we were hesitant to accept medical advice. At the end of my story, which I relayed from copious notes on my iPad, she asked me why we still used the hospital. It seemed that she had also had a bad experience with Scott & White. The truth of the matter is that in central Texas, patients don’t have any decent viable alternatives. For all intents and purposes, Scott & White is the only game in town. At the end of our hour-long meeting, she said that she was closing the case as “an invalid claim.” Before she left, I gave her Sue’s office number so that she could speak with a health care provider who saw Dad on a weekly basis and who knew about the care that we were providing my father. I learned later that she had indeed called Sue before she closed our case.

I still hadn’t given dad his second dose of Flagyl. Because I had been concerned that Dad had had a bad reaction to the Flagyl, Dr. Clark had written me a prescription for a different antibiotic. I called Dr. Pfanner’s office and talked with Angie, the nurse, and she said that she would defer any decision about the two antibiotics to the nephrologist. I called Sue again and she urged me to give Dad the Flagyl. She said that Dad was probably dehydrated or was suffering from “dialysis dementia.” She was surprised that we hadn’t seen it earlier. She also said that until Dad was over the CDiff, they would limit the removal to 1,200 ml and then add fluid, which meant that I no longer had to worry about him becoming dehydrated from dialysis.

During Tracy’s visit earlier this morning, she told me that our aides needed to wear gowns when they cleaned up after Dad. American HomePatient didn’t have any, so I ordered some gowns from a company that I found on the internet, but they wouldn’t arrive for several days. In desperation, I drove to the dialysis center and spoke to Susan, Dad’s dietitian, about my dilemma. I asked her if I could borrow a few gowns and pay them back with new ones when I received my order. She left for a few minutes, and when she returned, she handed me an entire pack and told me that Sue said that we didn’t have to give them any of our gowns. As much as I complained about Scott & White, they did employ a host of angels of mercy.

Michell left this morning shortly after Gale arrived at 10:00 A.M. Before she left, Michell told me that she didn’t know if she would return and that she’d have to pray on it. Not only was she upset by Dad shoving her yesterday afternoon, but the deputy storming the house last night, followed by the investigation this morning, had shaken her up and taken her very much out of her comfort zone. I would do a little praying myself during the next week.

We spent the next hour updating an incredulous Gale about the events of the previous 24 hours. I wrapped up my day of work and finally logged off for the Thanksgiving weekend.

After lunch, I retired to the kitchen to bake some more biscotti. Gale worked with Dad on his exercises prescribed by Janet, the occupational therapist, and Kristen, the speech therapist. Gale also crushed ice for him to swallow.

By 2:30 P.M., Dad was ready for a nap. About an hour later, he was up from his nap, and he was ready for happy hour by 5:00 P.M. Since he had started swallow therapy, he had become a more active participant during happy hour and used this time to swallow ice chips, although he complained of a cold mouth.

The diagnosis

Published on August 15, 2017 by mellowdee55Leave a comment

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.

When 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.

After 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.

Shortly 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.

At 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.

By 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.

November 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.

While 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.

Shortly 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.

I 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.

Derailed on the road to recovery

Published on August 8, 2017August 9, 2017 by mellowdee55Leave a comment

November 18, 2015. Dad had a good night. I slept well and woke up a bit earlier than usual, getting an early start at work. I didn’t know when Gale and Dad woke up, but I started hearing Gale’s voice coming from the bedroom a few minutes before 7:00 A.M. The Imodium that I administered in Dad’s tube feed last night seemed to be working, and he looked very perky when I administered his meds.

Because he was feeling better, it seemed like a good time for me to take a break and change his trach. I set up my TV trays to do that. I still hated this weekly task, and I had a knot in my stomach throughout the procedure, but I was accomplishing it in less time.

Michell arrived for her week with us shortly before 11:00 A.M. Gale updated her on Dad’s recent health challenges and progress and showed her the handout of Dad’s new swallowing exercises. Shortly after Michell arrived, I administered another dose of Imodium into Dad’s feeding tube, along with his midday meds.

Brenda was scheduled to arrive for Dad’s physical therapy session at noon. When she hadn’t arrived by 12:30 P.M., Dad decided to lie down and rest. Brenda finally arrived at 1:00 P.M. for Dad’s session. Considering that he had not felt well enough to exercise the past few days, he did pretty well during his session and had a very good workout.

Kristen arrived promptly at 2:00 P.M. for Dad’s second swallow therapy session. Mom’s book club met on Monday, so Mom hadn’t been at home for Kristen’s first session with Dad, but Mom met Kristen today, and she really liked her. Kristen put Dad through his paces, exercising his neck muscles. Like Gale, Michell sat in on these sessions so that she could coach Dad with his exercises on days when he did not have therapy. Earlier in the day, Adan, the manager of the therapists with Scott & White Home Care, had called me to ask about our Monday session with Kristen. I told him that I had been very pleased and was very optimistic about Dad’s chances. He told me that to ensure that Dad would be successful, he, Kristen, and I would work together to determine the perfect time for Dad to have the modified barium swallow study (MBSS).

About 30 minutes after Kristen left, Sally and Ray, dear friends of my parents (and me) stopped by for a visit. In about a month from now, they would move from Temple to New Braunfels. I saw Sally only a few times a year, but she is a delightful person and fabulous quilter and crafter of cards. Her husband, Ray, is also an interesting person who had been involved in the space program, another one of my interests. I could practically recite the dialog from the Apollo 13 movie, and Ray had been involved with this launch at NASA. I would miss them both after they moved from Temple. Dad came out for a few minutes to visit with them. The visit lacked our usual spontaneous conversation. They hadn’t seen Dad in almost a year, and I suspect that his appearance was a little shocking and was the proverbial elephant in the room. It didn’t help that Dad wasn’t feeling well.

Shortly after Sally and Ray left, I administered another Imodium pill into Dad’s feeding tube. Although he was feeling a bit better, he still was not better.

After dinner, we played cards, and I won, which indicated that I was improving as a scorekeeper.

After Michell helped Dad get ready for bed, she went to her room to change her clothes for bed. While she was out of the room, I administered Dad’s nighttime meds and trach care. During the trach care, I noticed that his trach was moving around—a lot. I quickly saw that there wasn’t anything holding it in place. Seconds later he said that he felt sick. I grabbed a small red plastic basin from the bathroom, applied some pressure to his trach, and turned on the suction. Eventually, he felt well enough to hold the front of his trach while I tightened the collar which had somehow become loose. It took about 30 minutes to get him to the point where he felt well enough to lie down and try to sleep. From what I could surmise, one of two things had loosened his trach collar since this morning. Either the swallowing exercises had loosened the trach collar, or his shirt collar had been caught under his trach collar when I changed out his trach. Regardless of the reason, Dad and I were both a little rattled by the experience. Michell returned to the bedroom shortly after I had adjusted the ties on the trach collar. This incident was another example of how quickly his situation could change and why we couldn’t let down our guard for a minute.

November 19. I woke Michell and Dad at 4:00 A.M. Michell got up, but Dad continued to doze. Michell had a difficult time getting him out of bed, and when she did, he kept falling asleep on the commode. When Dad moved home after being discharged from the CCH, we had purchased a box of Depends. Dad had flatly refused to consider them, but today he didn’t want to go to dialysis without them, which was an indication of just how bad he felt. It seemed as if his condition was becoming serious. I was thankful that we had an appointment with a gastroenterologist tomorrow.

For the first time since he had come home, some 52 days ago, he was not ready when his transit service arrived.

During his dialysis session, Dad had the nurse call the EMS dispatch office 15 minutes before his session was scheduled to end so that he wouldn’t have to wait any longer than necessary for his ride home. When Michell told me that they had removed 2500 ml from him, I was flabbergasted. When he left there, his dry weight was 138.28 lbs. He was probably dehydrated when he got there, and then they removed over two liters of fluid from him. I couldn’t help but question the judgment of the nurse who made the decision to remove almost twice the usual amount of fluid.

When Dad and Michell arrived home at 11:15 A.M., Dad was wiped out and was not feeling well. Within a few minutes after getting back on the bed, he was nauseous, and his trach collar was loose again. I tightened the collar, but he still didn’t feel well. I was becoming very concerned about him and called the Home Care nurse. Stephanie was working today and arrived shortly before 1:00 P.M. in response to our call. After checking Dad, she said that heard congestion in his lungs that she had not heard before. Also, his oxygen saturation never exceeded 93% while she was there. My concern for Dad escalated when Stephanie advised me to call 911.

Stephanie stayed with us until the ambulance arrived and then provided the EMTs with his current status. When she left, the EMTs listened to his chest and ran a bedside EKG. They said that they didn’t notice the congestion that Stephanie had mentioned and that his EKG appeared to be normal. Dad was still complaining about his stomach and nausea. They said that they didn’t see any urgency in taking him to the emergency room, but they would take him if we wanted them to. Dad was already taking a cocktail of drugs that included antibiotics, so I decided to get him something for nausea and let the EMTs leave.

Although Dad’s condition wasn’t any better, I was somewhat relieved by the EMTs’ assessment, and that we were able to avoid the emergency room. Dad was scheduled to see the gastroenterologist tomorrow, so I just needed to get him through the night. I called Sue, and she refilled Dad’s prescription of ondansetron (Zofran). Mom drove to the pharmacy as soon as I got off the phone with Sue. By the time that she returned home with the prescription, Dad was in a deep sleep. I eventually administered the Zofran in his feeding tube shortly before 5:00 P.M.

We finally woke Dad around 7:00 P.M. He said that he felt better, and his sense of humor was on display. I gave him his evening meds and then encouraged him to get up, which was a mistake, because he thought that it was morning. He was very confused and disoriented and wanted to go into the bathroom so that he could wash his face and brush his teeth. Michell and I finally convinced him that it was nighttime, and got him into his night clothes and back in bed by 8:30 P.M.

November 20. After working for a couple of hours, I went to Dad’s room to wake him and Michell. Usually, they don’t have to get up early on Fridays, but today Dad had an appointment with the gastroenterologist, and the wheelchair transit van was scheduled to arrive at 8:30 A.M. Dad slept through the night, but he wasn’t feeling very well when I woke him. The diarrhea continued to plague him. Between his dehydration from the diarrhea and the dialysis session yesterday, he was shaky and unsteady.

We were ready when the van arrived five minutes early. The van transported Dad and Michell to the clinic, and Mom and I followed in the car. The clinic was located less than five miles from my parents’ home and after locating the doctor’s office and paying the co-pay, we were seated in the waiting room a good 20 minutes earlier than the 9:20 A.M. appointment. When they weighed my 6’1” father, his weight was 134.3 lb, which was less than it had been when he left dialysis yesterday. We waited almost an hour in the waiting room before we were escorted to an examination room. Exam rooms aren’t very large, and they can seem downright tiny the patient is in a wheelchair and is accompanied by a three-person entourage.

After waiting for a few minutes, Julianne and Talitha, the dietitian and nurse, arrived. I really liked them. They were very attentive, and among other things, they confirmed that Dad had a G-tube (and not a J-tube, as Dr. Klovenski had insisted on October 18). While we were there, they changed out Dad’s G-tube, which should be done every month. Julianne considered changing his formula from Nepro to something else but decided that they should test Dad first to ensure that his diarrhea wasn’t caused by his 5-1/2 month liquid diet of Nepro. When Dr. Timothy Pfanner arrived and reviewed Dad’s chart, he said that Dad could have bolus feeds, but not until he was over whatever was causing the diarrhea. To rule out CDiff, the doctor wrote an order for some lab work. I know Dad hadn’t been feeling well, but it was a nice coincidence that we happened to have an appointment with the gastroenterologist at this time. As we left, I scheduled a follow-up appointment for Dad and called the transit service to pick up Dad and Michell.

Mom and I arrived home shortly after 11:15 A.M. Dad and Michelle were not picked up by the van until 11:30 A.M., and it was almost noon before they arrived. Dad was pretty tired by the time he got home. He was scheduled for a physical therapy session in a couple of hours, so I administered some meds and Michell helped him back to bed for a nap.

Brenda arrived shortly after 1:00 P.M. for the physical therapy session, but Dad was wobbly and was unable to execute transfers between the bed and wheelchair with the walker.

Friday wasn’t his usual day for physical therapy, but next week was Thanksgiving, and the therapists were adjusting their schedules for the holiday. Dad was scheduled to have his 60-day evaluation with Kathleen next Wednesday, so he wouldn’t be able to have therapy again until after her evaluation. I told Brenda that we would work with Dad and have him walk between now and then. Brenda said that he should not be walking. I was a little surprised because the other therapist, Lara, had had him walking. I was tempted to tell her that we had already been walking with him, but thought better of it.

After Brenda had left, Dad napped for a short time before Janet arrived for his occupational therapy session. Occupational therapy treatment wouldn’t be reviewed by Kathleen for Dad’s 60-day evaluation, so Janet would return for another session next Wednesday, the day before Thanksgiving. After Janet left, Michell coached Dad through some of his speech exercises.

Stan left work early and drove from Houston to my parents’ home. He arrived shortly after 5:00 P.M. and just in time for happy hour. Shortly after 6:00 P.M., Dad went to his room and read the paper while we had dinner. After dinner, we played Oh Hell and hit the hay pretty early.

It had been a long week, and I was glad to have Stan with us for the weekend. Dad had seemed to have been progressing, with only little blips along the way. This week it felt like our progress had been derailed, and I hoped that after our visit with the doctor today Dad would get back on track.

After the fall

Published on August 1, 2017August 7, 2017 by mellowdee551 Comment

November 15, 2015. Dad had a restless night, waking up a few times during the night. At 8:45 A.M., he was ready to get up. Before Gale helped him transfer from the bed to the wheelchair, I administered his morning meds and trach care. Gale had done a great job of taking care of Dad while I was in Houston, but she was glad to have me back in Temple to resume the trach care. After I left the room, Dad wheeled himself into the bathroom and proceeded to shave and wash up. He seemed to have an upset stomach and didn’t get out of his room and into the kitchen to visit with us until 10:00 A.M.

As Mom and I were driving to church, I told her that I had read the log book that the aides kept about Dad, so I knew about Dad’s fall yesterday. I was pretty irritated that she had decided to withhold this information from me. I was very invested in his care and recovery, and it disturbed me that my parents would choose to keep this information from me. She agreed that they would not withhold this type of information from me again and said that she would talk with Dad after lunch. However, we both hoped that there would be no next time.

While we were at church, Dad told Gale that he was tired and that he wanted to lie down. He also complained about some tightness and soreness in his back. Gale thought that he also seemed a little depressed about yesterday’s fall in the bedroom. The home-patient hospital beds had only two side rails, which did nothing to keep Dad in bed. At one point, I had used pipe cleaners to attach a couple dozen little bells to four chairs that we pushed up against the sides of Dad’s bed. He still might have been able to escape from the bed, but we hoped that the bells would wake at least one of us during an attempted escape. The chairs and bells had worked for about a week but were less effective as Dad got stronger. One side of the bed was partially obstructed because of the oxygen concentrator and nebulizer. While Dad napped, Gale moved the wheelchair to the other side of the bed and locked it in place, which made that bad boy practically impossible to move.

After Mom and I returned home from church, Gale told us that Dad had diarrhea. According to her, it had started last night and had become progressively worse during the day. I decided to call the Home Care office and request a visit from the on-call nurse.

After lunch, Dad read the newspaper in his room and rested until the nurse arrived at 4:20 P.M. She said that Dad’s vitals were great and said that he didn’t have a fever. When she learned about the fall (During every visit, providers ask if you’ve had any falls.) and the difficulty that Gale and Mom had had getting him up off of the floor, she said that we could always call for a nurse for assistance. Regarding the reasons why we had called for a nurse, she could only speculate about the cause of his diarrhea and back pain.

Now that the fall was common knowledge, Mom and I spoke with Dad for a few minutes, and I implored him to ask for help when he needed to get up. He restated that he didn’t want to be a bother, and I told him that we had hired someone whose sole purpose was to be bothered by him. He agreed to ask for help going forward.

He seemed to feel a bit better and joined us for happy hour.

Mom was the big winner at cards this evening. It had been a long day, and we were all tired. We started our nighttime routine at 7:45 P.M. and by 8:30 P.M. we were all in bed.

November 16. Dad had a tough night, starting at 1:00 A.M. This bout of diarrhea had a firm grip on him that was becoming progressively worse. He eventually got out of bed and ready for the day around 8:00 A.M. Gale was able to convince him to exercise with the core weight, but by 10:00 A.M., he wanted to return to his room to lie down.

Shortly after noon, Tracy, the nurse, stopped by for Dad’s routine Monday checkup. Similar to yesterday, Dad’s vitals were good. I asked her if we could give Dad some Imodium, but she said that she could not give advice about medications. I finally asked her what she would do if she was in my position, and she said that she’d give her father half of a pill.

I went to Walgreens and purchased a box of Imodium. A standard dosage was two pills, so I wasn’t concerned about crushing a half of a pill and administering it into his G-tube. I wouldn’t have thought that such a small dosage would have helped much, but he seemed a little better for the next five hours.

At 2:00 P.M., the doorbell rang, and we opened the door and met Kristen, the speech pathologist. When Dad wheeled out to meet her, she introduced herself to Dad as the speech therapist. He said that that was a shame because he hadn’t prepared one. To her credit, she laughed. The session might have been for Dad, but I learned a lot about our complex system of muscles that enables us to swallow. She had Dad work through a couple of throat exercises and left a sheet of exercises for him to practice between sessions. She also said that he could eat crushed ice anytime that he wanted.

After Kristen left, Gale helped Dad use the walker to walk from the kitchen to the laundry room, a distance of about 12 feet. He walked slowly, but his steps were steady and controlled. He stayed up for the remainder of the day, resting only while Mom, Gale, and I ate dinner.

After dinner, Dad felt like playing cards, which was our litmus test for how well he was feeling. By 7:30 P.M., I had won, and we were moving Dad toward his bedroom to start the nighttime routine.

My room was the only room on the second floor, with windows on three sides. On most nights, I could see the moon from my bed. We were expecting some storms through the area in about six hours, and the wind was already howling around my room when I turned out my light.

November 17. The storms that were predicted to start at 2:00 A.M. started two hours late, just around the time that I woke Gale and Dad. Dad had had a great night’s sleep, but he still had not recovered from the diarrhea. I hated to send him away for 4-5 for dialysis hours with these symptoms and hoped that another 1/2 Imodium would help him. Fortunately, the torrential rain that started at 4:00 A.M. had let up some when the wheelchair transit van arrived. The rain ushered in a cold front, and the temperature had dropped almost 20 degrees between the time that I woke up and when Dad and Gale were picked up.

Fortunately, they didn’t have to wait too long after dialysis for a ride, and Dad and Gale were home by 12:15 P.M. He was pretty wiped out and wanted to take a nap. By 12:40 P.M., he was back on the bed, hooked up to the tube feed and moist air. I administered his trach care and a portion of his midday meds. I became distracted by some shiny object and forgot to administer his antibiotic. Less than five minutes after I left his room, he was sleeping. While he slept, I called Sue, our friend and nurse practitioner at the dialysis center, to see what else I could do for Dad. She said that I could safely give him two pills, the recommended dosage of Imodium.

By 4:00 P.M., Dad was awake but was still very sleepy. Before he joined us for happy hour, I crushed two Imodium tablets, mixed them with water, and inserted them into his G-tube.

While Mom, Gale, and I enjoyed assorted beverages, Dad ate some crushed ice. A little bit of crushed ice went a long way, but at least he was getting a chance to practice swallowing.

Dad took a short rest in his room while Gale, Mom, and I ate dinner. Although he wasn’t feeling his chipper self of a few days ago, he felt well enough to beat us at cards.

While Gale and I were in Dad’s room running through his nighttime routine, Gale found a little scorpion on the floor near her bed. Gale was one of the most fearless women I knew, but she screamed like a little girl when she saw the critter. We had barely disposed of it when she encountered another one crawling on the bathroom floor toward the bedroom carpet. My parents had found scorpions in the house in the past, but I don’t recall ever seeing one, and tonight we saw two.

Although many things in our lives were uncertain, one thing was very certain: Gale would never walk barefoot in the bedroom again.

Just when I thought we were making some progress

Published on July 25, 2017 by mellowdee551 Comment

November 10, 2015. Dad had another good night’s sleep. At 4:00 A.M., I took a short break from work and woke Dad and Michell. They progressed through their morning routine without any hitches, but Dad was a bit apprehensive about today’s trip to dialysis. Although today’s transit service to dialysis would be with the wheelchair transit and not the gurney service, he was probably nervous about being moved from the wheelchair with the Hoyer lift. It was supposed to be a safe way to move less ambulatory patients, but it was an unknown entity for us. Before the transit van arrived, we positioned the Hoyer sling under Dad so that the nurse could attach it to the lift when he reached the dialysis center.

When Michell and Dad arrived at the dialysis center, instead of using the Hoyer lift, the EMTs picked up Dad and placed him in the dialysis chair. We had hoped that the nurse at the dialysis center would weigh Dad in the wheelchair so that we could establish a dry weight for him, but the EMTs were too fast. When Dad’s session was finished, Michell encountered a couple of EMTs who had just dropped off a patient. She was able to convince them to transport them home, which enabled Michell and Dad to arrive home at 11:15 A.M., which tied our record time.

Between my working and Dad’s three hours’ worth of naps, I didn’t see him except for trach care until happy hour. He seemed well rested, and by 7:45 P.M., he had beat us at Oh Hell. He headed for bed, and we were finished with our nighttime routine by 8:15 P.M. Our mornings and nights were starting to run like well-oiled machines.

November 11. Dad had another good night. I might have heard him cough twice. At 7:45 A.M., I was between meetings and wanted to administer trach care and meds, but Dad was still in bed and didn’t want to get up. I told him that he was a lazy bones and that we’d have to make “Lazy Bones” his theme song. He smiled, didn’t open his eyes, but started singing the song.

With the assistance of Michell, he finally got out of bed and got himself shaved and washed up by 8:30 A.M. It was Wednesday—change out day for the aides. Michell was packed up and ready to leave, but she couldn’t go until Gale arrived. Gale was running about an hour late, and she eventually arrived around 11:00 A.M. The ladies exchanged information about Dad, and Michell was on her way.

Mom and Dad met about finances for a while this morning, and then Dad took a short nap before Stephanie, the nurse, arrived. She was also running late, but she finally arrived at 1:00 P.M. Stephanie said that Dad’s vitals were all good and that his lungs sounded clear. She also said that she saw some signs of his bedsore starting to heal. I asked her about the odds of Dad being released from Home Health Care on the 24^th. She didn’t think that that would happen, and said that Dad’s home care would most likely be extended an additional 60 days. I wasn’t sure how the process worked, and I had been asking every caregiver for her opinion. The thought that we’d be discharged after our initial 60 day period unnerved me. I was almost out of the lubricant that I used for Dad’s trach. Before Stephanie left, I showed her the package and asked if she could find us some extra packets.

Before Stephanie’s car left the driveway, Brenda pulled up behind her for Dad’s physical therapy session. I didn’t watch the session, but from what I could hear, it seemed like she was working with him on transfers. I once heard her say that Dad got an A on something that he did, but not an A+. At the end of the session, she said that he got a gold star for the day. I had to laugh to myself as I wondered about the type of psychology that they employed to get him to cooperate. On her way out, Brenda stopped by my office and asked me about the rubber mat for the shower that I had agreed to get during our discussion on November 6. I had forgotten to order one, but I promised that I would find one. I also asked her about the chances of us being discharged on the 24th, and she also didn’t think that it was likely. Gale asked her about the exercises that they should concentrate on until she returned on Friday. Whenever the providers left the house, they sat in their cars and updated their notes about their visits with Dad. Before Brenda had pulled out of the driveway, I had ordered Dad’s bath mat from Amazon.

Shortly after Brenda left, Mom and Gale helped Dad use the walker and he walked 48 feet. I logged off from work shortly after 4:30 P.M. and told Dad that I needed to change his trach, and that we’d all be happier if I took care of that chore before happy hour. I grabbed my two TV trays and my assistant, Gale, and we ushered Dad into the bedroom. I probably didn’t need an aide to help me, but I felt better having one of them there with me. Sometimes I forgot to bring something, or I needed an extra hand. For the first time in about six weeks, Dad’s trach was not crusty. The weather had been bad and he’d been forced to stay indoors and away from the dry air.

Dad won at cards again. Before he went to bed, I had Gale administer the meds and the trach care. Gale had said that she would handle Dad’s trach care while I was out of town for a couple of days this week. I was hoping that I could also convince Michell to do the same when I left for a couple of days in December. Gale did a great job, but to ease her mind some, I typed up some notes that detailed every step of the basic routine trach care and the med prep processes. I would be gone for about 48 hours, so she would not need to know how to change his trach.

November 12. Shortly before 3:30 A.M., I heard Dad call for Gale to help him to find the urinal. I got up shortly after that and woke them. I watched as Gale handled all of the meds and routine trach care this morning—her last practice run before I left for Houston. Everything ran smoothly, and we were ready when the wheelchair van arrived at 5:50 A.M., some 20 minutes early.

While I was working, I heard the audio caller ID on my parents’ landline announce in a distorted voice that we were receiving a call from Watts Prison. For a moment I considered letting the call go to voicemail, but my curiosity got the better of me. I laughed out loud when the caller identified herself as Kristen Watts. So that she didn’t think that I was a nutcase, I quickly explained why I was laughing. After exchanging schedule information, we agreed on Monday and Wednesday sessions at 2:00 P.M. for Dad’s swallow therapy. Her first visit with us would be on Monday, four days from now. I practically ran out of the office to find Mom and share the good news!

I received a call from Gale at 12:20 P.M., stating that she and Dad were on their way home from dialysis. I waited until they got home, and then I left for Houston. The last time that I had been home was on September 22. During that three-day visit, I had come home to pack a few items that I would need during Dad’s final days in hospice.

Gale had her first solo run with the meds and trach care right after I left. Dad took a nap until 3:00 P.M. and was up for the remainder of the day. The three of them played cards, and Mom won again. Gale got Dad in bed by 8:00 P.M. and had no problem administering his night time meds and trach care.

That evening, I attended my photography class. The last time that I had seen my classmates, I told them that I had just finished making hospice arrangements for my father. We had had quite a change in fortune since late September. I had been attending class with some of these people for more than five years, and I had known the instructor since 2008. It felt good to be with them again, and they were very excited about Dad’s progress.

November 13. Dad had had another great night, and he slept until Gale woke him at 8:00 A.M. Shortly after Dad was out of bed and dressed, Gale noticed that the line from the nebulizer was dry, which meant that Dad wasn’t receiving any moisture with his oxygen. She called Jared from American HomePatient, and he came over immediately. It seemed that we were supposed to change the water bottle every two weeks. Gale added this missing tidbit of information to our list of chores, but it would have been nice to know this about six weeks earlier. Jared and the other representatives who set up Dad’s home care room probably did tell us everything that we needed to do, but this orientation occurred amid a whirlwind of activity with no written instructions left behind.

Stephanie, the nurse, came by around noon to take Dad’s vitals and check his bedsore. She said that the bedsore was healing nicely and that it was looking great. Bless her heart; Stephanie also brought us enough trach lubricant to last for a couple of months. These home care nurses were wonderful. In hindsight, I don’t know if I ever told them how much I appreciated them.

When Brenda stopped by later for Dad’s physical therapy session, she had Dad practice a dry run (literally) getting in and out of the shower with the new mat. She didn’t have him walk today, but she had him run through a series of bed exercises.

My Mom’s dear friend, Marilyn, stopped by around 3:30 P.M. with a nice arrangement of mums and visited with my parents for about an hour. Mom hadn’t resumed her social life, and she benefited by having her friend visit.

Meanwhile, I was in Houston. While I had been in Temple with my parents, my employer had arranged for new office space on our campus. I would be moving from a cubicle to an open-space environment with less room for books and personal belongings. I spent most of the day in my cube, throwing out paper. I filled up three trash cans and three recycle bins, and was still not finished. Stan was thrilled when I brought home three boxes of personal items.

November 14. Dad seemed to be on a roll. He had another great night’s sleep. He and Gale ran through their morning routine and arrived at the dialysis center shortly before 7:00 A.M. It was a slow day for the EMS transport service, so the wheelchair transport arrived shortly after Gale called them, and then she and Dad arrived home shortly before noon.

Dad was tired and was ready for a nap after Gale administered the midday meds and trach care. After Dad had drifted off to sleep, Gale left the room.

While I was in Houston, I ran several errands, stopped by the office to throw out more paper and prepare my belongings for the move, and got a haircut. I encountered several friends and happily told them about how well Dad was progressing. When I started my return trip to Temple at 2:00 P.M., I was feeling positive about how we were getting along.

Shortly after I left Houston, Dad woke up from his nap and needed to use the bedside commode. Instead of calling for assistance, he decided that he could get out of bed and into the bathroom without assistance. Not surprisingly, he fell as soon as he took one step from the bed. Gale heard the commotion through the baby monitor and ran to Dad’s room. She was unable to lift him off of the floor to get him back into the bed. She called for my mother for assistance. It took the two of them almost an hour to get him back into bed so that she could assess any damage caused by the fall. Not only had he been attached to the tube feed, but the oxygen was also attached to his trach collar, which was cupped over the trach tube. While on the floor, he had put a tremendous strain on his G-tube and he was lucky that he didn’t decannulate himself during the fall. After Gale had straightened out the mess caused by the mishap, she helped Dad transfer into the wheelchair.

An hour or so later, Dad wheeled himself into the kitchen and asked Mom not to tell me about his fall. She said that she wouldn’t tell me about the incident, as long as he promised not to try to get out of bed again without assistance.

When I arrived at my parents’ home shortly before 5:00 P.M., I was greeted by what seemed like a happy household. We had a nice happy hour, and after dinner, we played two games of Oh Hell. Gale was excited to win the first game, and Mom won the second game.

When we finished playing cards, Gale told me that she wanted to take a shower. She said that I might want to read her log book to catch up on the activities that occurred while I was gone. I read her notes about today’s fiasco and was horrified, appalled, and furious. Such a stunt could have seriously hurt him. I spoke with Gale before I went to bed, and she was very upset. She said that she had never experienced such an incident before and was not sure that she wanted to return, which would be a tremendous loss for all of us. Not only would we lose a wonderful caregiver, but we also were very fond of her.

Fuming, I went upstairs and called Stan. The poor guy got an earful as I unloaded my frustrations of Dad’s day. He talked me down and told me to approach Dad and his resistance to following instructions in terms of my fears. He wasn’t kidding. Dad was his own worst enemy, and like Gale, I was afraid to let him out of my sight.

At last! Ambulatory enough for an office visit with a doctor

Published on July 18, 2017July 18, 2017 by mellowdee552 Comments

November 6, 2015. We had a good night. I didn’t hear Dad cough once, and I was able to sleep uninterrupted for five hours. I was slow in getting up, though, and didn’t start to work until 4:15 A.M. Dad and Michell were also slow to rise, not getting up until after 6:00 A.M.

We received a steady stream of visitors today, starting with Janet, Dad’s occupational therapist. She and Dad had another good workout today, and I could hear them chatting nonstop during their session. Before she left, Janet said that because Dad was progressing so well toward his goals, she would set new goals for him and extend his treatment for another month.

After Janet had left, Dad took a short nap so that he would be well rested when Brenda arrived for his physical therapy session. Brenda wanted to start working with Dad on transfers to the shower. The bathroom could be a dangerous place, and she had recommended that we install grab bars in the shower, a suggestion that was not well received. Shortly after she arrived, Brenda encouraged us to consider adding permanent grab bars in the showers. I asked if we could use the suction-cup bars, and she was adamant that this was not just a bad idea, but an unsafe one, too. With Dad’s trach, I told her, anything producing sheetrock or tile dust was off the table. After a few minutes of discussion, she suggested an alternate plan that would require only an anti-slip bath mat, which was a more palatable solution for Dad. I told her that I would obtain one as soon as possible.

Since Brenda’s last visit with us, the monstrosity known as the Hoyer lift had been delivered and was in our garage. Brenda showed us how to place the Hoyer lift sling in the wheelchair so that it could be used when Dad arrived at the dialysis clinic. She also had Dad use the walker. He first walked 28 feet and then she had him walk an additional 48 feet. Shortly after she left, Stephanie, the nurse, arrived to check his vitals and his bed sore. Dad was pretty tired after all the exercise and he napped away the afternoon while I worked.

After dinner we played Oh Hell, and I won for a change. As we were moving toward the bedroom, I realized that I had forgotten that I was supposed to change Dad’s trach today. I didn’t like changing it on dialysis days and I didn’t want to wait until Sunday, so I set up my TV trays and performed that most-dreaded chore at bedtime. Dad was still confused about what I was doing to him during the trach change and would become a little apprehensive as I prepared for the procedure. It could have been that he was apprehensive because he sensed my nervousness. Ironically, he would often fall asleep before I was finished.

Fortunately, we had ended our game-playing early. I was finished with tonight’s respiratory therapy activities shortly after 8:00 P.M. and was in bed by 8:30 P.M. Back in Houston, Stan was at a poker game, so we had to forgo our nightly phone call and be satisfied with texting each other good night.

November 7. Although it was Saturday, we still had to prepare Dad for dialysis. I didn’t have to get up quite as early as for work, so I slept until 4:00 A.M., which was when I needed to wake Dad and Michell. It had been raining earlier this morning and we had already received a couple of inches of rain. To ensure that we could get Dad transported to the ambulance without him getting wet, I moved one of the cars out of the garage so that the ambulance could back in. The EMS dispatcher called us at 6:00 A.M. and told us that they were running late and would arrive around 6:20 A.M. At 6:22 A.M., we heard a knock on the door to the garage, and we opened it to find two EMTs. As we did every dialysis morning, we watched for the ambulance and we couldn’t understand how we had missed their arrival. We didn’t even hear them back into the garage. We had two personable female EMTs again today and they enthusiastically helped Dad onto the gurney.

Stan arrived around noon. We had heard on the news that the weather was bad between Houston and central Texas, and he had driven in the rain for most of the trip.

Michell and Dad arrived home from dialysis around 1:15 P.M., which was a little late, but wasn’t unusual for rainy days. For the second time, we had the same two EMTs for the return trip.

Shortly after lunch, Mom walked out to the mailbox to retrieve the mail. She had received a bill yesterday from Scott & White EMS and today opened a much larger one from the CCH, for $650. Compared to the original bill, the amount was small. However, the postal carrier seemed to deliver another medical bill every day, and opening the mail was becoming Mom’s daily aggravation.

I needed to purchase some items for my photography class in Houston, so Stan and I drove to the local Hobby Lobby to see if they carried what I needed. After driving 160 miles, driving around town wasn’t much fun for Stan, but it felt good to get away from the house and spend some time alone with him. I found what I wanted, but it was much more expensive than my art store in Houston, so I decided to wait until I got home.

When Stan and I returned home, we found that everyone was napping. Michell had fallen asleep in a chair in Dad’s room and Mom was sleeping in a chair in the living room. At 3:45 P.M., I heard familiar creaking noises from the baby monitor and entered the bedroom as Dad was trying to get out of bed. I didn’t know if he couldn’t remember that he couldn’t walk or if he was taking everyone’s comments to heart about how well he was doing, but he just would not ask for help when he wanted to get out of bed.

The five of us visited for happy hour before dinner. After dinner, we played another two games of Oh Hell, and Stan and Michell were tonight’s big winners. By 8:30 P.M., Dad was in bed and ready for me to administer trach care and meds.

November 8. Dad had another great night, which meant that Michell, Stan, and I were able to get some much-needed rest. Dad woke up once and had Michell help him to the bathroom, but after that, he stayed in bed until 8:00 A.M.

Dad might have been slow to get up, but when he zipped around the corner in his wheelchair, he was clean, shiny, and perky. I escorted him back to his room for some quick trach care and meds, but after that, he was raring to get the day started.

When Mom and I returned from church, Stan and Michell were walking with him with the walker, and he walked 68 steps. We couldn’t convince him to walk again, but he was out and about in his wheelchair for most of the day. Michell was also able to get him to do some of the exercises prescribed by the therapists.

Around the time that Stan was planning to leave, Jo, our next door neighbor, stopped by to see Dad. He had just drifted off to sleep, but we woke him for her visit. She had been very concerned about Dad during the past few months. She was about to leave town for a few days, and Mom and I couldn’t deny her a chance to see Dad. After Jo had left, Stan and Dad played a couple of games of cribbage, and Dad won both games. These guys loved to play cribbage, but most of the time, Dad won.

After Stan had left, Dad seemed a bit down. He commented that the therapists didn’t seem like they were “interested in moving him along.” We did our best to convince him that they had a plan and he was executing it well. I suspected that he was apprehensive about the appointment with the wound care specialist tomorrow, which didn’t help his mood. I also didn’t think that Dad judged his progress relative to his condition when he was discharged from the hospital, but rather from his condition before the surgery.

After dinner, the four of us played a couple of games of Oh Hell, and Mom and Dad won. Since Dad had been home, I had been keeping score. Evidently, I wasn’t such a great scorekeeper because I seldom won.

Although we played a couple of games, Dad started getting ready for bed at 7:45 P.M. I was finished with the trach care and meds and ready to call Stan by 8:30 P.M.

November 9. I woke up at my usual time and wasted no time getting started with my work day. Today would be our first appointment in a doctor’s office since Dad’s return home. I suspected that I would be away from work every bit of two hours. I would need to make the best use of my shortened work day.

Dad had a great night, but he wasn’t feeling great when he woke up at 6:30 A.M. He seemed to feel better by the time that I had administered his trach care and morning meds.

He and Mom joined me in the office for a few minutes to see if they could log on to their bank’s website. Before he was hospitalized six months earlier, Dad had handled most of their banking online. Not surprisingly, he had forgotten the passwords during that time. Mom and I had tried to log on to their accounts a few weeks earlier but had managed to lock up the accounts after multiple unsuccessful attempts. After a few failed attempts of his own, Dad realized that he would need to call the bank to regain access to his accounts.

The fun times on the computer were cut short when Janet arrived at 11:25 A.M. for Dad’s occupational therapy session. She usually visited on Fridays, but because of vacation plans, she had asked to change our appointed time to Monday this week.

I called Brian at EMS and protested the last bill that we had received for the transit service. Since October 24, Scott & White EMS had been providing gurney transit but billing us for wheelchair transit. He made it sound like they were doing us a favor by providing us with a reduced rate, but I had been under the impression that we’d receive gurney transit, which was covered by Medicare, until we had the Hoyer sling. I figured that I wasn’t going to win this battle, but I told him that it was never my understanding that we would pay for wheelchair transit before we started using the Hoyer sling. He apologized for the misunderstanding and said that he would refund us for these charges for the week in question.

After Janet left, Dad took a short nap while the rest of us ate lunch. The EMS wheelchair transit arrived at 1:45 P.M. to take Dad and Michell to the Wound Care Clinic. The transit driver predicted that we’d be there for a couple of hours. Based on the glacial speed that he moved, he was probably correct. Michell and I kept looking at each other while rolling our eyes. I had never seen an able-bodied person move so slow. I drove my car and arrived before the EMS transit. I was able to get Dad signed in and complete the new-patient paperwork by the time that he and Michell arrived. It took longer than it should have to get Dad into the waiting room because the transit driver escorted Dad and Michell through the wrong door.

The waiting room was packed, and as I looked around the waiting room, Dad seemed to look healthier than the rest of the patients. The exam rooms were pretty small. Between Dad, a wheelchair, Michell, the doctor, a nurse, and me, there wasn’t much room to move. We had to perform some Rubix Cube moves to open the door to let the nurse and aides in and out of the room.

Dr. Robert Plemmons said that Dad was healing well and was in better condition than he had anticipated. However, he said that we should limit Dad’s time in the wheelchair to two hours a day. Furthermore, when Dad was in bed, we should relieve pressure on the sore by rotating him 30 degrees laterally. The doctor seemed startled when I said that “that wouldn’t happen” and that “Dad needed to spend as much time out of bed as possible.” Furthermore, “I want to limit Dad’s time in the bed to two hours.”

The doctor insisted that we had to find some way to relieve pressure on the bed sore. I asked about a donut cushion, but he said that they weren’t useful. He looked at Dad’s egg crate foam cushion and asked if he could cut out a V shape. After we had agreed, he pulled out a knife and went to town on Dad’s cushion. When he was finished, Dad had an altered cushion that satisfied all of us. Before we left, the nurse showed Michell how she wanted her to start dressing the wound.

We were finally finished with our 2:30 P.M. appointment at 4:05 P.M. I called the EMS dispatch office and told them that we were ready for our return trip home. I then scheduled Dad’s follow-up appointment. It was a nice day, so I suggested that Michell and Dad wait outside for the wheelchair transit. I had some errands to run, so I left them. When I returned home at 4:40 P.M., I was shocked that they weren’t home yet. When I called Michell, she said that the transit van had had a problem with the lift, which took them more than 15 minutes to fix. No longer in the sun, a strong breeze had picked up, and she and Dad were now cold. They finally arrived home at 5:10 P.M.

We had a short happy-hour visit before dinner and told Mom about the trip to the wound center. Michell said that she was shocked when I disagreed with the doctor. I had reached the point where I was not going to blindly follow doctors’ orders, especially ridiculous ones. All of his other care givers were adamant that Dad needed to get out of the bed. It never ceased to amaze me how doctors could be so focused on a tiny area of the body and not consider the whole person when making their prognostications.

While Mom, Michell, and I ate dinner, Dad took a short nap. He was a little tired from his road trip to the wound center. After dinner, we played cards, and Michell won again. We were finished with cards by 8:00 P.M., and I was finished with Dad’s trach care and meds by 8:30 P.M. I hoped that Dad would sleep well again tonight.

This day had been another major milestone: a trip to a doctor’s office, something that would not have been possible just a few weeks earlier. After six months with this bedsore, which was started by a fall in the hospital in May, it seemed that Dad was well on his way to being healed. One issue down, two big ones to go: swallowing, which would enable us to get rid of the G-tube, oxygen, and trach, and his mobility.