Progressing to a new mode of transportation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

A relative calm after the storm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

 

 

The diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Derailed on the road to recovery

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.

trachTubeBecause 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).

elephantAbout 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.

blogNov10Shortly 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.

dohDuring 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.

blogaug1-leftWhen 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.

blogaug1-rightAlthough 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.

blogaug1-leftWe 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.

blogaug1-upStan 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.

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

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.

cross7We 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.

walkerSince 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.

cross9November 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.

cross6When 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.

walkerWhen 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.

cross11After 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.

cross10The 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.

cross6This 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.