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.

 

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.

Just when I thought we were making some progress

hoyerLift
Hoyer lift and sling

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.

laZbonesNovember 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 24th. 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.

cross9Before 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.

blogNov10-02November 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.

blogNov10-01Gale 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.

blogNov10Stephanie, 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.

blogNov10-02November 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.

blogNov10-01Shortly 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.

blogNov10-02When 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.

 

Finally: some progress and encouraging news

November 2, 2015. I had been working for over an hour when Dad woke up at 5:00 A.M. after a restless night. He was ready to get out of bed, so Gale got up, disconnected his oxygen and tube feed, and helped him transfer from the bed to the wheelchair. Just four weeks earlier, this transfer required the brawn of both Gale and me. Now, Dad needed just a minor assist from one of us. Because he was now able to reposition himself in the bed, we no longer had to use the draw sheet to move him in the bed.

By 6:00 A.M. he was dressed and ready for his morning meds and trach care. His burst of energy was short-lived, however. By 7:30 A.M. he was ready for a nap, but 90 minutes later he was awake and ready to face the day again.

blogNov01-6Later in the morning, I received a call from Barbara at the Scott & White gastroenterology center. She said that her office had received a referral from Dr. Issac. She wanted to schedule an appointment for Dad to have his G-tube changed and to discuss bulous feeds, which would enable us to administer larger quantities of Nepro three to four times each day and discontinue the continuous feed. Because of Dad’s dialysis schedule, I couldn’t schedule an appointment any earlier than November 30.

A short time later, I received a text message from Sue, our friend and the nurse practitioner at the dialysis center. After conferring with Dr. Issac about the missing Fluconazole (antifungal), she said that the doctor wanted Dad to take the pills for another two weeks. She wrote a new prescription for two weeks’ worth of pills, which still cost the better part of $200, but about half the cost of the prescription that we had declined on Saturday at the pharmacy.

The nurse arrived shortly before 1:00 P.M. to take Dad’s vitals and check his progress. She thought that he was progressing well, and was gone within 10 minutes.

While I was working, Mom took a phone call from Scott & White EMS. They asked if we still needed the EMS transport service to dialysis. Evidently, we’re supposed to call them at the start of each month to schedule pickups for the upcoming month. I hoped that the next call that we made to the dispatch office was to cancel the service. At $120 per week, this service was starting to get a bit pricey.

blogNov01-5Shortly before I was ready to log off for the day, Dad wanted to make his way into the office, which was no easy task. Although the door was wide enough for the wheelchair, the placement of a large desk just inside the door made wheelchair access impossible. Gale and I had to carefully transfer him from the stable wheelchair to the less stable 1980s era four-star desk chair. I was glad that the physical therapist wasn’t here to watch.

A couple of days earlier, Dad had lifted his legs off of the bed during a wheelchair transfer and Laura had been having him exercise in front of the bathroom vanity. Dad said that he wanted to try walking with the walker. After happy hour, Mom followed Dad with the wheelchair and Gale retrieved Dad’s walker and helped him walk 14 steps down the hallway, which was a huge accomplishment. I’m not sure that we should have been having Dad walk without the supervision of his physical therapist, but we were very excited. Only two weeks earlier, standing and moving with the walker would have been impossible.

After dinner, we were ready for a cutthroat game of Oh Hell! By 8:15 P.M., Mom was the big winner, and it was time for us to begin our nighttime routine.

My nighttime calls to Stan were much more enjoyable after a day like today. We were starting to get more support from healthcare providers and Dad’s strength was starting to return. Our baby steps seemed to be moving in the right direction.

November 3. Yesterday’s good day continued on into the night. Dad slept well and didn’t wake up until I woke him at 4:00 A.M. He and Gale marched through their morning routine and were picked up by the EMS at 6:00 A.M. Dad’s scheduled pickup time was 6:20 A.M., but you never knew when they would arrive. Dad didn’t like to be late for anything, so he was usually ready by 5:45 A.M.

blogNov01-3I had assumed that Michell would replace Gale tomorrow, but I hadn’t heard anything from Becky, the owner of One on One Personal Home Care. I dashed off a quick email to her to confirm, and then returned to my day job.

Because Dad had been picked up a bit early this morning, he had gotten started early on his dialysis session, and he was able to leave dialysis early. He and Gale didn’t need to wait very long for the EMS ride for the return trip, and they were home by noon. After I administered his meds and trach care, Dad was ready for a little nap.

About a week earlier, on October 26, Barbara, a neighbor and doctor with Scott & White, told us that she would try to help get Dad an earlier appointment with a pulmonologist so that he could get started on his swallow therapy. Today, I asked Mom if she had heard from Barbara. She said that she had, and Barbara had said that after the pulmonologist had checked Dad’s medical records, he declined to see Dad, saying that Dad was a chronic aspirator and that treating him would be pointless. This discouraging news was practically impossible to process. I couldn’t bear the prospect of Dad never being able to eat again. Mom and I tacitly agreed to not share this depressing news with Dad.

When he woke up about three hours later, Gale interrupted me at work to tell me that Dad seemed very disoriented. He was in the bathroom washing his hands, but he didn’t seem to know where he was. We assumed that he was exhausted from dialysis and that he would snap out of it. He didn’t come out of his room to visit with us during happy hour, but he seemed to perk up when asked if he wanted to play cards after dinner.

blogNov01-2Dad was still very tired and was ready for bed shortly after Mom was declared the Oh Hell winner of the night. By 7:30 P.M., he was in bed and ready for me to administer his meds and trach care. I sat with him while Gale prepared herself for bed, and then went upstairs to call Stan. To say the least, my updates to him about the daily events were varied from day to day. Because Dad went to bed early, I was also able to retire early and hoped to get an extra 30 minutes of sleep.

November 4. I had been working for about 30 minutes when Dad woke up shortly after 4:15 A.M. He wanted to get out of bed, and he had Gale disconnect him and help him transfer to his wheelchair. He wheeled himself into the bathroom and proceeded to fall asleep. Gale helped him back into the bed and I suctioned him. He had been coughing a lot and had a super wet cough, so I thought that he’d have a lot of secretions to suction, but the trach tube was dry. I surmised that the cough had more to do with his lungs than his trach. After sleeping for about three more hours, he was awake and raring to get out of bed at 7:00 A.M. I took a break from work about an hour later and administered his morning meds. By 8:30 A.M., he was dressed and alert and leaving the bedroom at full speed in his wheelchair.

Around 9:45 A.M., the three of us got with him to walk again: one of us on each side and one behind him with the wheelchair. His gait was a bit unsteady, but he took about 17 steps, which was equivalent to almost 19 feet, a distance that we based on the size of our floor tiles.

blogNov01-7Michell arrived at 11:00 A.M. and conferred with Gale for a few minutes. It was nice to have a few weeks in a row with the same two aides. The transitions were easier for them and they were getting to know one another. Shortly after Gale left, Dad wanted to lie down for a short nap.

When Dad woke up, he wanted to work on his computer. I had commandeered his computer desk and had disconnected his computer so that I could use the keyboard and mouse, so he had to use Mom’s computer. With him and Mom in the office, it seemed like the perfect time for me to get out of the room and take a lunch break.

Shortly after 1:00 P.M., Laura arrived for Dad’s physical therapy session. She had Dad walk the same path that we had had him walk earlier, but he walked it at least twice during their session. She then moved him into the bathroom and had him do some exercises while holding onto the vanity. Dad was pretty exhausted when Laura left and was ready for another nap.

Just as I was logging off for the day, I received a text message from Adan, the manager of rehab services at S&W Homecare. I had texted him earlier in the day and asked if we could talk sometime today after 3:00 P.M. When I called him, he said that he would contact our PCP (probably Tony Issac or Sue, Dr. Issac’s nurse practitioner) to have a swallow study ordered for Dad. He also said that he’d have Kristin, a speech pathologist, contact me sometime tomorrow to schedule an appointment with Dad. Adan and I agreed that we wanted her to have some swallow therapy sessions with Dad before the modified barium swallow study (MBSS) to ensure that he would be able to handle the barium. He also said that he would contact the Pulmonary desk at S&W to see if he could find out which doctor would be assigned to Dad.

I was stoked. Adan was one of a handful of people who was in our corner. Without him and the nephrology team at the dialysis center, I don’t know what we would have done. I was thankful that Mom had met and had come to know Adan while Dad was at the CCH. I couldn’t wait to share this good news with Mom and Dad.

We played Oh Hell again, and Dad won (beating Mom by just a few points). We were in bed early and I called Stan at 8:30 P.M. to share the news of the day. It was a nice quiet night until about 12:30 A.M. After hearing Dad cough for about 15 minutes, I got out of bed and went downstairs to suction his trach.

November 5. Sometimes I found it difficult to sleep with all of the noise that emanated from the baby monitor. This was one of those nights—or mornings. I finally got back to sleep about an hour before my iPhone played its annoying wake-up ring tone. I made my way back downstairs, started the coffee maker, and logged on to work.

blogNov01-4Dad and Michell were sound asleep when I woke them shortly after 4:00 A.M. We had an uneventful morning and Dad was picked up for dialysis shortly before 6:00 A.M. His dialysis session was finished before 11:00 A.M., and they were home before noon. After administering his midday meds and trach care, he was ready for a nap.

He woke up from his nap a bit disoriented again, but he became more alert as the day progressed. I knew that he was completely alert when he complained after learning how much we were spending on his in-home care. It wasn’t a topic that I wanted to have discussed too much within earshot of Michell. A cost of $1,000 per week might have seemed high, but it was a bargain for 24/7 care.

Other than the discussion about medical bills, Dad was in fairly good spirits for the remainder of the day. We were experiencing another beautiful autumn day today, and Dad wanted us all to sit on the patio during happy hour. Michell was starting her second week with us and was beginning to feel more comfortable with us, and she started talking about her personal life. I have friends who spell their names as Michelle and Michele. I asked her about the spelling of her name and whether hers was a family name. She laughed and said that her mother didn’t know how to Michelle and consequently, her name looked like “mic-hell.”

blogNov01-6After dinner, Dad felt well enough to play a couple of games of Oh Hell: Dad won the first game and Mom won the second. We had two sets of criteria that determined how long we played cards: how Dad felt and whether he had dialysis the next day and how I felt and whether I had to work the next day. For the most part, I wanted to start Dad’s nighttime routine by 8:30 P.M. so that I could go to sleep by 9:30 P.M. A perfect night was one in which we all got six hours of uninterrupted sleep.

A perfect night was one in which we all got six hours of uninterrupted sleep.

 

Wrapping up our first month of home care

October 26, 2015. I had hoped that we’d have an uneventful night, but shortly after 1:00 A.M. Dad started coughing. I could hear Michell encouraging him to use the Yankauer wand, but he refused and kept coughing that terrible wet cough. I finally got up and went downstairs to see if I could convince him to use it, but at 2:00 A.M. I opened a trach care kit, suctioned his secretions, and then returned to bed. When my iPhone alarm played its annoying wake-up ring tone at 3:30 A.M., I was too tired to get out of bed. I kept snoozing the alarm until 4:15 A.M. and started to work 15 minutes later with a much-needed cup of coffee.

Dad was slow to wake up this morning, too, which was OK for him because he didn’t have any early appointments. At 7:00 A.M. he was ready for me to administer his morning trach care and meds.

In addition to work, I had several administrative health care chores to address today. After 27 days at home, we were running low on meds, so I emailed Dr. Issac to have him order new prescriptions. I also needed to reschedule Dad’s wound care appointment. I don’t know what I had been thinking, but when this appointment was scheduled, I didn’t realize that it could conflict with Dad’s dialysis if we encountered any glitches with the dialysis session or transportation. Also, within the next few days, Dad would require a 30-day physical therapy assessment, which I scheduled with Kathleen.

When I had logged on to Dad’s My Chart medical portal account over the weekend, I had learned that thanks to a referral from Dr. Issac, Dad now had an appointment with a pulmonologist. Unfortunately, the appointment was scheduled for January 4, more than two months from now. When I called to see if I could schedule an earlier appointment, I learned that they were booked solid until the new year. I guess that explained the January 4 date, and that I wasn’t going to do any better.

We were running very low on Nepro. When I called American HomePatient to order more, the clerk asked me about the other items that I needed. I told her that I didn’t know what all I needed and was informed that I was supposed to place a single order for everything that I would need for the upcoming month. I had once told Dr. White that patients and family needed a playbook to understand how to navigate the hospital system. The same was true for home health care. The American HomePatient folks were very friendly, but a short bulleted list of guidelines, not to mention an order form, would have been very helpful.

My final call for Dad was to Scott & White Home Care to see how long we were covered by Medicare. I learned that we had received an initial 60 days of coverage. At the end of the 60 days, Dad would be reassessed for an additional 60 days of coverage. This was good information to know and it would have been nice to know it about 30 days earlier.

While I was working, Stephanie, a new nurse, arrived to check on Dad. Because she had not been here before, she performed a very thorough assessment of him, which I learned was the typical protocol for all first visits. After she left, Michell told me that Stephanie had also changed Dad’s trach dressing, which made me feel as uncomfortable as the time that my mother-in-law cleaned out my refrigerator. I should have administered Dad’s midday trach care and changed his dressing an hour earlier, but I hadn’t been able to take a break.

Several days earlier, our neighbor Barbara, had brought Dad some flowers and cake. Mom called Barbara to see if she could return her cake holder. While they were talking, Barbara asked about Dad’s condition and if he was swallowing yet. Mom told her, no, and then explained that we needed a referral from a pulmonologist, but we wouldn’t be able to see one until January 4. She and her husband are both doctors at Scott & White and Barbara said that she could help. Mom and I were hopeful that we might be able to expedite the process.

I was bone tired today, but I managed to eke out eight hours of work and sneak in a little nap. When I woke up, Mom and I drove to the HOP office to fill out an application for a paratransit pass for Dad. Their office was less than 10 miles from my parents’ home, and we thought that we could expedite this process by filling out the form in person. Unlike some websites that enabled you to download a PDF version of the application form, this one required you to request that they send you one by mail.

When Mom and I returned home shortly before 5:00 P.M., Dad was napping. We woke him for happy hour, but he said that happy hour wasn’t that much fun for him, and he went to his room to read the paper. He stayed there until Mom, Michell, and I had finished dinner. I knew that two days didn’t constitute a trend, but now Dad had seemed depressed for two days. Thankfully, he still wanted to play Oh Hell when we finished dinner. Michell won for the first time, but Dad was a close second.

We got Dad snug in bed by 8:30 P.M. He had suctioned himself pretty well while he was getting ready and I didn’t encounter any secretions during the nighttime trach care. I hoped that this was a positive sign for a good night’s sleep.

October 27. It was becoming apparent to me that I was clueless when it came to predicting good and bad nights for Dad. Although he seemed fine when he went to bed, within four hours, secretions had accumulated in his trach. As usual, he wasn’t too keen on suctioning himself at night. This combination of secretion build-up and his refusal to suction led to lots of uncomfortable coughing. Around 2:00 A.M, I heard him call for help. I ran downstairs and he said that he needed the urinal. It’s supposed to be placed on the bedrail, but tonight it was left in the bathroom. He hadn’t wanted to bother anyone, so he tried to get out of bed to get it and was partly out of bed when I entered the room. After Michell and I moved him back into bed, I trudged back upstairs to bed for a bit more sleep.

Michell and I woke Dad at 4:30 A.M. I took care of his trach and then Michell took over. He was ready to go by 5:45 A.M., but after we had waited for several minutes past his scheduled pickup time, I called the dispatch office to check on their status. They never answered the phone, but they eventually arrived shortly before 6:30 A.M.

A few hours later, I contacted Sue, the nurse practitioner at the dialysis center, and asked her about my request for Dad’s prescriptions. She hadn’t seen my earlier email to Dr. Issac and promised to place the new orders at once.

Although Dad had less fluid removed today than on Saturday, he was exhausted when he returned from the dialysis center. After I administered his midday meds and trach care, he slept for three hours. He was awake and ready to get up shortly after I logged off from work for the day, and he joined us for happy hour. He returned to his room while we ate dinner, and he was ready for a game of Oh Hell when we were finished. Mom was the big winner tonight, and once again, Dad came in second place.

October 28. Dad had another night of coughing. I got up a couple of times to check on him, but he seemed to be sleeping through it. I swear he could sleep through just about anything. I got up at 3:30 A.M. and started to work at 3:45 A.M. After several weeks working these crazy hours, my coworkers in India, Israel, and the UK had become accustomed to seeing me online a couple of hours earlier than usual. Depending on the location, they were now seeing me online during their morning to early afternoon instead of late afternoon to early evening. As nice as it was to have more time to meet with them, I hoped that we wouldn’t continue this schedule much longer. As convenient as my hours were for my coworkers to the east of me, it wasn’t as convenient for those to the west, like my manager, who worked in California. I was very lucky to have a job that enabled me to work while taking care of a family member.

Today was an off day for dialysis, so Dad didn’t need to wake up before 5:00 A.M. During a break from work, I took care of the trach care and meds, and then left him to Michell. During one of my meetings, Gale arrived and Michell updated her on the events of the past seven days.

Stephanie, the nurse, stopped by again today. I was concerned about Dad’s secretions and was afraid that he was still battling pneumonia. In addition to the suctioning at night and during trach care, he also suctioned himself with the Yankauer wand during the day. She listened to his chest and said that it was clear. She explained that the trach alone was enough to cause secretions and that the effects of pneumonia can last for months. He had a lot of issues, but she thought that he was progressing well on all fronts, except for the bed sore.

Kathleen, the physical therapist, came by and performed her 30-day assessment of Dad and formulated a new plan for the next 30 days. In the coming month, Dad’s goals would include transfers to the shower and the dialysis chair. Dad needed to be able to maneuver from a wheelchair to the dialysis chair so that we could change from the expensive ambulance transfer to the more affordable HOP paratransit bus. I was still nervous about Medicare coverage for the various therapies, including speech therapy, which hadn’t yet started. Kathleen assured me that if Dad progressed well in one area but not as well in others, Medicare wouldn’t stop all of the services—only those no longer necessary.

While I was still working, Mom went to the drug store to pick up Dad’s prescriptions. In the short time that she was at the pharmacy, her car battery died. Fortunately, I was a member of AAA and eventually she received service and was able to start the car and drive home.

During the afternoon, Dad was up for most of the day and joined us for happy hour, but rested while Mom, Gale, and I ate dinner. Gale mentioned to me that although he seemed physically better, she thought that Dad seemed sad. I didn’t want to hear comments like this because they only reinforced my concerns about him and reminded me of articles that I had read about occurrences of depression following ICU delirium.

We played cards again, and Mom won again. We started moving Dad toward the bedroom and his nighttime ritual at 8:15 P.M.

October 29. The alarm woke me this morning at 3:30 A.M. Having the alarm wake me instead of Dad was like a gift. It seemed that I had slept throughout the night—6 hours! I got up at 3:45 A.M., started the coffee maker, and was working by 4:00 A.M. Gale started waking Dad around 4:15 A.M. During trach care this morning, Dad gave me a good scare when he had a hard coughing jag while I was suctioning him. He seemed to get over it without any damage, except to my blood pressure. With a little assistance from Gale and me, Dad was ready to go at 5:45 A.M. While we were waiting for the ambulance he scared the bejeezus out of me again when he experienced another hard coughing spell. We had come too far for him to slip away from us again. He hadn’t coughed like this since he had been home, and few things scared me as much as these hard coughing spells.

This morning, the ambulance drivers were both women, which was a first for us. Dad’s blood pressure dropped during dialysis, so they stopped removing fluid early and just cleaned his blood. In the end, they removed about 820 ml—about half of the usual amount. The ambulance arrived at noon to bring Dad home, and surprisingly, the same two EMTs from the morning also brought him home. It was unusual to have the same EMTs on both ends of the trip. It was more unusual that both EMTs were women.

Dad was very tired when he arrived home and he needed more than the usual assistance to transfer him from the gurney to the wheelchair. Shortly after administering his midday meds and trach care, he was out like a light for three hours. One of my weekly chores was to keep the pill dispenser full. During my lunch break, I organized pills and called Sue for a couple more refills. It would have been nice if all of the prescriptions lasted the same length of time. By the time that I logged off for the day, I had worked for almost 10 hours, and I was wiped out.

We were experiencing Chamber-of-Commerce-type weather today and the four of us agreed that the patio was perfect for happy hour. The temperature hovered around 80 degrees Fahrenheit, with low humidity. We sat out on the patio for about an hour. After dinner, we were all ready for a game of cards—especially Mom, who won again. She seemed to be on a roll.

I had some trouble suctioning Dad tonight. It seemed that the tubing that I used to suction the trach kept hitting something, and I silently reprimanded myself for not changing his trach today. I don’t like to change out the trach on dialysis days, and now I was very tired, too. However, the thought that his airway might become obstructed during the night made it difficult for me to go to sleep, and I kept waking up because I couldn’t hear him through the baby monitor.

Good grief. I couldn’t sleep when he was coughing and I couldn’t sleep when he was quiet.

Thank heavens for our first ‘plan of care’ meeting!

October 20, 2015. Dad slept well, waking only once during the night. At 4:30 A.M., I took a brief break from work to administer his Midodrine and his morning trach care. Gale and Dad were ready several minutes before the Scott & White ambulance arrived, and Dad was hooked up to the dialysis machine by 7:00 A.M.

Although Tuesday was the scheduled day for the aides to change, Gale had spoken with Becky, the owner of One on One Personal Care, and requested that they switch out on Wednesday to better accommodate Dad’s dialysis schedule, which could not change. Becky agreed and later sent me email, notifying me of Gale’s replacement tomorrow. According to Becky, “Michell is 47 years old and has 26 years of caregiving experience.” She continued by stating that Michell had fantastic references and came highly recommended. What Becky didn’t tell me was that she had just hired Michell yesterday.

When Dad and Gale returned from dialysis, she took him to his room and hooked him up to the humidified air and tube feed, and I administered his midday meds. Dad was tired from dialysis and drifted off to sleep.

poc02Shortly after lunch, a UPS driver rang our doorbell. He had come to pick up the “box” that contained the infant-sized trach care kits. When I pointed to the five-foot stack of six boxes, he said that his pickup request specified only one box. I apologized for the mix-up,  sent him away empty-handed, and called American HomePatient. I had noted the woman’s name who had assisted me yesterday and was able to speak with her again. Evidently, our order had specified one case of FR-14 trach care kits, but the order pickers sent us six cases of FR-8 trach care kits. This discrepancy proved problematic for their inventory system and she said that she’d have to get back to me later.

After dinner this evening, we played cards, and Mom won again. The game ended at 8:30 P.M., at which time we started our nighttime regimen. Dad had slept well last night. I hoped that we could log two good nights in a row.

October 21. Dad, Gale, and I had a great night’s sleep. Although they both slept longer than me, I didn’t begrudge them their longer sleep. It was nice for me to score six hours of sleep. By 7:00 A.M., Dad had received his morning meds and trach care, and he was dressed and in the kitchen talking with Mom. Gale used their time in the kitchen to prepare to return home for the next seven days.

poc03While I was attending an online meeting at work, Michell, the new aide, arrived. Gale spent the next hour orienting her to the routine and her responsibilities. Before Gale left, she confided in me that she thought that she smelled cigarette smoke on Michell’s hands. To address her suspicions, Gale stressed to Michell that we had oxygen in the house and that smoke particles were a hazard for Dad because of his trach.

Gale filled a room with her presence and when she was gone, the house felt empty. Michell seemed a little slow getting started, but everyone paled in comparison to Gale.

At 12:30 P.M., I took a long lunch break and went to the dialysis center. Today was Dad’s first “plan of care” meeting between Dad’s dialysis team and me, his advocate. Dad would have his next meeting six months from now and then annually thereafter. During the meeting, I met Dad’s nephrology team: Susan (dietitian), Sue (dialysis nurse practitioner), Dad’s social worker, a couple of other providers, and Dr. Tony Issac (nephrologist), whom I knew from Dad’s stay at Scott & White Memorial. Sue and Susan were also members of my parents’ church, so I already knew three of the people on the team.

pocBubbleDr. Issac started the meeting by asking if we needed anything. Without any hesitation, I told him that I needed him to be Dad’s PCP. Dad was running out of several medications that required the authorization of a physician. I said Dad also needed referrals to see specialists. I told him that although I was an MBRT, I would really like Dad to see a pulmonologist. The room became quiet, people looked at one other for a moment, and the doctor gave me a questioning look. I responded by saying, “make-believe respiratory therapist.” He laughed. In addition to explaining the need for a pulmonologist, I told them about our difficulty in getting a referral to a wound care specialist and how I had had to order the Y extensions from Amazon.com.

Prior to this meeting, I had heard that Dad could not get his dialysis catheter wet. I asked about bathing, and they were practically militant in their response about the importance of keeping the port dry. Basically, this invasive device was like a highway to his heart and brain. Dampness could introduce infection, and we all agreed that we wanted to do everything possible to avoid introducing an infection into his heart. I explained that while Dad was hospitalized, I had become accustomed to seeing the results of his lab work. Even in the last week, his lab results fluctuated wildly. He had been away from the hospital for three weeks and I was nervous about how well he was doing. The only lab results that I had seen were specific to the kidneys. The doctor said that he could order additional lab work and monitor the results.

Finally, I mentioned Dad’s weight, which was now less than 135 pounds. When he was admitted to the hospital five months earlier, Dad weighed 161 pounds. I felt better now that we now had an IV pole on his wheelchair, which enabled him to continuously receive nutrition, but I thought that he needed more calories. Susan told me that I could increase the flow rate from 50 to 55 ml/hour. If he tolerated that, we could increase the flow by an additional 5 ml/hour. She thought that Dad should consult a gastroenterologist to see if the doctor would recommend a bolus feed.

poc02Susan also said that Dad’s calcium levels were high, caused by his extended time in bed. She added that movement would help to decrease the calcium levels. It’s ironic that when you’re sedentary, calcium leaches from your bones and into your blood, which causes the high calcium levels in your blood and decreases your bone density. Although his bones could use extra calcium, I couldn’t give him any because of the calcium in his blood.

We also discussed different ways to weigh him. Unless they can weigh Dad, they cannot calculate a dry weight for him, which means that they’re guessing about how much fluid to remove. The scale at the dialysis center can accommodate a wheelchair, but nothing larger. Because Dad arrived on a gurney, they could not weigh him. They discussed different options, including a Hoyer sling. The dialysis center owns a Hoyer lift, but patients need to provide their own slings. Unfortunately, Medicare could not understand the use case of needing the inexpensive sling without the expensive lift. Someone joked that maybe we could buy a sling on Amazon.com. Dr. Issac pulled out his phone and learned that you could indeed. Nevertheless, we decided to wait until we could transport Dad in a wheelchair and weigh him at that time.

The doctor was very accommodating, and the general feeling in the room was one of awe. They could not believe that we had had so little support, and for all intents and purposes had been on our own. I left the meeting with an overwhelming sense of relief that we now had an additional support system. In addition to being able to call the various dialysis providers, I could also communicate with them via MyChart, the patient portal for Scott & White.

dadOct19
On the patio

When I returned home, Michell watched while I administered Dad’s trach care and midday meds. Shortly after I returned to work, Brenda stopped by for Dad’s physical therapy session. I could not attend the session, but Michell said that she saw Dad stand up on his own by holding on to the bathroom sink. She watched the entire session and thought that he did pretty well. After Brenda left, Dad napped until I logged off from work.

The weather was still nice and the four of us enjoyed happy hour on the patio. After dinner, Michell passed our litmus test and joined us for a game of Oh Hell. Dad had now had two good nights in a row. After running through the nighttime routine with Michell, I hoped that Michell’s first night with Dad would be uneventful.

October 22. Like an answer to a prayer, Dad had another quiet night. Today was Michell’s first day of dialysis with Dad. I don’t know what went wrong, but Dad seemed to jump his groove during his morning routine, although he was still ready when the EMTs arrived at 6:15 A.M.  Although Michell had several years of experience working in nursing facilities, she had never been in a dialysis center, so this was a new experience for her. She managed just fine and was able to administer Dad’s Midodrine two hours into his session. She also had pretty good luck with the ambulance, and she and Dad were home from dialysis by noon.

As usual, Dad was pretty wiped out from dialysis and took a nap shortly after I administered his midday meds and trach care. Dad slept until almost 4:00 P.M. and was ready for happy hour when I logged off from work at 5:00 P.M.

poc01I think that our family happy hour was a new experience for Michell. She didn’t drink, but she still joined us and we found that this time was perfect for getting better acquainted with the aides. Although Dad could not drink with us, he still ensured that we kept the bar refrigerator stocked with the beverages that the aides like to drink.

At the end of Michell’s second day with us, I wondered if Dad would have another good night, or if he’d initiate her with a night of coughing and attempted bed escapes. For the sake of all of us, I hoped that the quiet nights would continue.