Transitioning from home-care patient to normalcy

May 15, 2016. Because Dad had told me that he wanted more access to his computer, I rearranged his computer station so that he could use his computer when I was at my home in Houston. Shortly before he was admitted to the hospital last May, he had purchased a new computer, which ran the Windows 8 operating system. Like most long-time Windows users, he had bonded with the Windows XP operating system and wasn’t enamored with the new operating system.  During my return trip to my parents’ home, Dad complained that he could not remember how to use his new computer.

sudokoBefore Dad’s extensive hospitalization, my parents worked Sudoku and crossword puzzles every evening after dinner. In addition to the hospitalization stay, having the home-care aides and me in the house had disrupted their daily routine. When I asked them if they’d like to resume their former evening activities, both of my parents said that they could not remember how to play Sudoku. I suggested that they start with crossword puzzles and that Stan might be able to get them started on Sudoku during his next visit.

Dad started saying that growing older was terrible. I wished that I could convince him that he was doing well, in spite of his setbacks.

May 17. Per Dad’s request, I was spending less time at my parents’ house. They seemed to be doing pretty well, so I felt more comfortable about limiting my time with them to long weekends, versus the week- or month-long stays. Truth be told, I was probably as eager to resume my normal life as they were to resume theirs.

Following the discussion with my parents about Dad taking pectin instead of a statin to control his cholesterol, I contacted Dr. Elizabeth Ebert, my parents’ cardiologist. According to Jennifer, Dr. Ebert’s nurse, Dad had told the doctor that he wanted to stop taking statins, so she removed them from his list of medications. When I relayed this information to my parents, they said that they had no recollection of this conversation, but now it seemed that we didn’t need to explore the issue of replacing the statin with pectin. Although the nurses were often our best source of information (or alternative viewpoints), I would have preferred that my parents confer with their doctors before adopting the suggestions of a visiting nurse.

Rain had been forecast for the central Texas area, but we received only a slight mist during the morning. Shortly after Dad returned home from dialysis, I packed up my computer and started my return trip to the BMC office in Houston. I arrived at the office shortly before 3:30 P.M. and worked until 5:00 P.M. so that I could meet my former manager for dinner. With my crazy caregiver schedule, I had had only rare interactions with my friends during the past year, and it was nice to visit with a good friend.

May 18. I was in Houston for the remainder of the week and would return to Temple on Saturday. When I worked from the office in Houston, my commute home from work wasn’t terrible, but it wasn’t always predictable, and I missed seeing Stan by a couple of minutes. Once a month, he had to work an all-nighter, and he would not be home again until sometime after 3:30 A.M. tomorrow.

2016_may_05A dove had built a nest of sorts (Doves are inept at building nests.) on our front porch. Whenever I walked up the porch stairs, I would stop and check on the status of the (ugly) baby dove and its mother. Today when I got home, the mother dove was gone, and it looked like a dead baby bird was in the nest.  I checked before going to bed, and the mother dove had returned. I assumed that I was wrong about the baby dove, but marvel at how still baby doves could lie. We had also had a dove nesting in a crepe myrtle tree in our backyard, but that nest now seemed to be empty. During the past couple of years, the porch had become a favorite nesting location for doves. Stan said that he didn’t like the messy doves nesting on the porch, but I enjoyed having this bird’s-eye view of spring.

Mom spent a couple of hours at the hospital today with her friend Marilyn, whose husband was battling bladder cancer.  Marilyn had been Mom’s friend in need on numerous occasions during the past year, and Mom was glad to be able to return the favor, if only in a small way. Mom’s time at the hospital with Marilyn was one of the few times that Dad had been left alone since he had been at home. Leaving Dad alone might not have been a big step for Dad, but it seemed like a huge milestone for Mom (and me).

May 21. It rained over three inches in Temple this morning, but by noon the rain had stopped. The weather was a little dicey between Houston and Temple, and the drive took me a little longer than usual. Shortly after I arrived, Mom and Dad returned home from dialysis.

IMG_1833Although I had planned to limit my time in Temple to long weekends, the upcoming holiday weekend and family reunion scheduled for the next weekend caused me to extend this trip to two weeks. Unfortunately for Dad, I would be commandeering his computer workspace during this time. After my father had been unable to get up while adjusting the irrigation in my parents’ vegetable garden, Stan suggested that we get them a tractor scoot. It’s sort of like a cross between a wagon and a scooter. We knew that my parents wouldn’t buy it for themselves, so we purchased it for them as an early wedding anniversary gift. Some assembly was required, but they seemed to like it and might actually use it.

rainMay 30. Today was the observed holiday for Memorial Day, so I had the day off from work. Instead of sleeping in, I was rudely awakened at 3:00 A.M. by a thunderstorm. With the memory of last year’s Memorial Day flood (and this year’s Tax Day flood) still fresh in our minds, we hoped that the storm would pass quickly and provide only a limited amount of moisture. Fortunately, the thunderstorm had not also been a gully washer. Mom and I had planned to weed the garden this morning, but we would postpone those plans until the afternoon.

2014_ 09cats_012Because Stan planned to take off from work next Friday and spend a long weekend with Dad while Mom and I attended a family reunion, he had stayed home this weekend. In addition to some chores that he had to attend to around our house, Peanut, our female cat, was experiencing some health problems that seemed serious, and she needed some attention.

Shortly before noon, Christine, the home care nurse, stopped by to discharge Dad from Scott & White Home Care. However, when she learned that Dad had not yet transitioned from the dialysis catheter to the fistula for dialysis, she decided to keep Dad in the program for another few weeks. We all agreed that although we didn’t anticipate any problems, Dad had a history of encountering unanticipated problems.

IMG_0998Although the ground was a little soupy, the conditions were perfect for pulling out weeds, and I was prepared with my knee-high rain boots. Mom and I weeded the vegetable garden for about an hour and were pleased with our results. The sky had remained overcast, so we weren’t sweltering from heat.

After I had a chance to de-mud myself, my parents and I prepared a Memorial Day dinner. Dad and I barbequed hotdogs on the grill and mom fixed baked beans. A few years earlier, Mom and Stan witnessed Dad and me accidentally dropping a hot dog on the ground and placing it back on the grill. No such event happened this year and it seemed that Dad and I were in finer grilling form than before his surgery.

After dining on baked beans and hot dogs, we played Oh Hell and Mom won.

transitionArrow2
Today was also one of my parents’ wedding anniversary.

May 31. When I woke up at 3:30 A.M., I had a headache. I took some Advil with my coffee and logged on to work at 4:00 A.M. A few hours later, I stopped work for a couple of hours so that Mom and I could accompany Dad to his appointment with the endocrinologist. We had never met this doctor and Dad’s new primary care physician had scheduled the appointment. I didn’t know what an endocrinologist did, and I wasn’t sure why we were meeting with her. I liked this doctor, but it was apparent during the introductions that this visit would be challenging for my parents. The doctor was Indian, had a rapid speech pattern, and was soft spoken. Neither of my parents could understand her, so I interpreted everything that she said.

In short, she said that Dad had severe osteoporosis, which he most likely got from lying in bed for six months. During that time, calcium had leeched from his bones and into his blood, which was why his calcium numbers had been so high.

transitionArrow1The doctor recommended that Dad take medication to strengthen his bones. Because of his renal failure, the only drug that he could take was Prolia, which is administered as an injection every six months. I told the doctor that I had known some women who sounded like they were dying after taking similar drugs. She told me that today was just a consultation and that we should go home, research the drug, and then make a decision. She said that if we had any questions, we could call her.

When we returned home from the doctor’s office, Dad told me that he was not going to take this drug. At first, Mom was concerned about his decision, but then we started googling for information about the drug’s side effects. Within 30 minutes, we all agreed that the adverse side effects could outweigh the benefits of taking this drug. I had mixed feelings about disagreeing with a doctor’s advice. Although it wouldn’t be the first time that we had gone against medical advice, I didn’t want us to default to that response.

Many of the doctors that we had encountered during Dad’s health-care event seemed happy to discuss his odds of living through the ordeal, but when it came to the drugs that they prescribed, they neglected to address benefits versus side effects, some of which had been severe. I know that thousands (maybe millions) of women take drugs to strengthen bones, but how long does it take for the drug to effect a change, and by what percentage? If you’re almost 90 years old, what benefit can you expect? If a doctor prescribes a drug to reduce fractures caused by falls, wouldn’t it be prudent to prescribe physical therapy that addresses building core muscles? I found it frustrating that the first option for doctors seemed to be the prescription pad.

 

Eagerly anticipating 7 days in a row without a medical incident

April 26, 2016. I was slow to get up this morning. I finally dragged myself out of bed at 4:05 A.M., but I wasn’t the only one who was slow to get started. At 5:05 A.M. I had to wake my parents. Even with the late start, Dad and Mom got off to dialysis on time, and Mom was home by 7:15 A.M., which meant that Dad was hooked up well before his 7:00 A.M. chair time. The workmen arrived shortly after 9:00 A.M. and started hanging plastic to isolate their work area and to confine their dust to a small area of the house. They worked most of the day replacing the broken tiles.

ouchCross2Now that Dad seemed to be recovering nicely, he didn’t need my constant presence, which enabled me to spend more time at my home in Houston. I left my parents’ home at 12:30 P.M. and arrived at my home in Houston around 3:15 P.M. I logged on and worked until Stan got home from work at 5:00 P.M., armed with some barbecued ribs, one of my favorite meals.

While Stan and I were eating, Mom called because she had not heard from me. I always call them after the three-hour drive, but today, my call was picked up by voicemail. Evidently, my parents had decided to get out of the plastic maze that their house had become, and they had been relaxing on the patio when I called and had not heard the phone ring.

My mother said that Mike’s contractors did an excellent job and that the tile looked as good as new.

April 27. A different set of tradesmen arrived at my parents’ house today. This group concentrated on repairing the cracked walls and spent quite a bit of time patching the cracks and doing other prep work necessary for painting. Dad had also contracted with the crew to paint the exterior of the house. It had stormed during the night, and these guys added to the wet house by power washing it.

pegOutCross3While the house was being prepped for its beauty treatment, Mom drove Dad to his appointment with Dr. Elizabeth Ebert, his cardiologist. The doctor said that Dad’s heart and its new valve were fine and performing well. While they were in her office, she accessed Dad’s x-rays and confirmed that she also saw seven compression fractures in his spine. Mom didn’t say why the doctor accessed Dad’s x-rays, but I assumed that Dad had told her about his constant pain.

April 30. Even though Stan and I took the day off from work today, I still woke up at 4:30 A.M. I did some laundry, tidied up around the house, and went to the grocery store. By that time, it was raining (again). By 9:00 A.M., I had my car packed and was ready to drive to Temple. Stan left shortly after me.

When I arrived at my folks’ house at 11:30 AM., the front door was unlocked, and when I went inside, it seemed as if no one was at home. On my third trip into the house while unloading my car, my mother came out of the master bedroom and told me that Dad was taking a shower. Until the dialysis catheter was removed, preparing Dad for a shower was an ordeal that involved securely shielding the dialysis ports and ensuring that we didn’t disrupt them in the process. By 12:30 P.M., Dad was dressed, and Stan was pulling into the driveway. Mom told me that before he left dialysis yesterday, the nurse measured his height, and he was 5’10”, three inches shorter than his height when he entered the hospital less than 12 months ago. Also as disturbing was the news that his weight was down to 143 lbs. During the past year, Mom had also lost 20 lbs—weight that she didn’t need to lose. After years of watching their weight, we were not concerned about too much weight loss.

ouchCross3When preparing the house for the repair work, the contractors had us remove vases, knick-knacks, and any other objects that they might damage. After lunch, I helped Mom return everything to its rightful place—sort of. I couldn’t believe how difficult it was for us to remember where everything had been for five years. I questioned both my power of observation and my memory.

The weather was beautiful in Temple, and Stan and Dad took advantage of the nice day by spending the afternoon outside doing yard work. Meanwhile, inside the house, Mom was baking a cake and I was preparing ham loaf for dinner.

After dinner, we played cards, and Dad beat Mom by one point.

May 1. I compensated for my lack of sleep on Thursday night by getting nine hours of sleep last night.  When I woke up at 6:45 A.M., I heard Mom in the kitchen. She had been up for almost an hour, and the coffee was ready.

IMG_1758Mom and I went to church, leaving the guys at home to play cards and perhaps do some chores. On the way out of the church, Pastor Tom hugged me and told me to say hello to my father. I told him that I’d been eager for Dad to get to the point where I could take him out to dinner. I then asked Tom if he could recommend any good sushi restaurants. He looked at me for a couple of moments and then said that I was still welcome to attend church. Mom hadn’t heard what I asked him, but the people behind us did, and they laughed. Tom loved beef and comfort food, but anyone who knew him also knew that he detested salad, vegetables, and sushi.

When we got home, Dad and Stan had taken a break from some outdoor chores and were playing cribbage, and Dad was winning. After lunch, Dad and Stan went back outdoors for more yard work until it was time for Stan to return to Houston. He left Temple at 4:30 P.M. and arrived at our home in Houston three hours later.

After dinner, we played Oh Hell, and I won.

May 3. I worked at my parents’ house until 11:15 A.M., and then started packing up for my return trip home. Dad had only 1,200 ml of fluid removed today. He still weighed 149 lbs, although he seemed to be eating as much as the rest of us.

I called Holly, the manager of American HomePatient to have them pick up everything except the wheelchair. Unfortunately, a lot of what they had sent us last September could not be used for other patients. We’d either need to sell or donate much of what we still had on hand.

ouchCross4As much grief as I gave Dad for not cooperating with his physical therapists, I had not completed my physical therapy sessions following my wrist surgery last year. I still had a couple of sessions left when Mom had a stroke last year, and I had not been able to see the therapist or surgeon. My wrist had been reminding me of these oversights for the past couple of days. Dad’s Extra Strength Tylenol seemed to help somewhat.

The leading news story of the day was that medical errors were the third leading cause of death in the USA for adults. The report went on to say that one in four people in the hospital would suffer from errors, and some of those errors would be fatal. After all that we had been through during the past year, this news story was not news to us, and not surprising. With all that Stan had witnessed with his parents’ final days, he also shared my sentiments.

Mom had been battling skin cancer during the past few years. Her younger years spent on California beaches and the Jersey shore, coupled with gardening and farming had finally caught up with her. During a trip to the dermatologist today, the doctor took a biopsy from her forehead. We were crossing our fingers that she didn’t require more surgery or radiation treatment.

I watch the election returns for the Indiana primary. I couldn’t understand what was happening. Trump was the big winner again, which surprised me, and Cruz dropped out of the race, which pleased and surprised me.

ouchCross1May 4. Mom woke up in the middle of the night, bleeding from the spot on her forehead where the doctor had taken the biopsy. She was able to stop the bleeding and did what she could to bandage it.

Kathleen stopped by today to assess Dad’s progress with his physical therapy. As she left, the homecare nurse arrived for Dad’s routine check-up. She said that Dad was fine, but she was concerned about Mom’s forehead. She told Mom that she must have the bleeding addressed today.

When Mom contacted the dermatologist, she was told to come to the office. While she was there, the wound was cauterized, which was very painful. The nurse also applied a tight compress to arrest the blood flow. By the time that I spoke with Mom on the phone, she told me that her forehead seemed to be doing fine.

incidentSignI kept hoping for a couple of weeks in a row where nothing happened to either of my parents. I sometimes felt like we should have one of those signs like the ones posted in factories: 7 days without a medical incident. Today the counter was reset to zero.

A clerk from American HomePatient stopped by to pick up medical equipment, but he didn’t have the wheelchair IV pole on the list, so the IV pole remained at the house. Although we still had some medical supplies in the house, having the larger equipment removed, coupled with getting the repair work done, was a huge milestone a step toward their life as they had known it.

 

Reaching another milestone: PEG removal!

April 13, 2016. My alarm woke me, but it was only just a little after 2:00 A.M., and the alarm was in my dream. I was able to get back to sleep and woke up at 3:45 A.M. when the alarm actually went off. I think that I inherited these wake-up dreams from my father. He often wakes up early from naps, swearing that Mom woke him.

While I worked, Dad sat at his desk in my parents’ office and finished preparing their tax return. Shortly after breakfast, Brenda, the home care physical therapist, called to see if she and her supervisor, Kathleen, could stop by later in the morning to assess Dad’s progress.

pegOutCross4I had to drive back to Houston this afternoon. I was already fighting to stay awake and decided to take a short nap during my lunch break, so I missed seeing the physical therapists when they arrived at 11:30 A.M. Dad was walking pretty well, but his recent back pain had affected his balance somewhat. Kathleen said that Brenda would focus more on his core muscles to help Dad with his balance.

Shortly after I woke up from my nap, the three of us left for Dad’s 2:20 P.M. appointment with the gastroenterologist. When we arrived, Dad weighed 151 pounds, his blood pressure was 112/69, and his temperature was 96 degrees. In the exam room, after Julie, the dietitian, asked about Dad’s protein and caloric intake, I was a little anxious when she said that Dad needed to consume an additional 20 grams of protein each day.

When Dr. Pfanner entered the exam room, he helped Dad up on the exam table and quickly removed the PEG tube. Dad didn’t feel anything, and Mom and I glanced away for a millisecond and missed seeing the “balloon” as the doctor removed it. For the better part of eight months, Dad had had a hole in his 87-year old stomach, and now I was concerned about how long it would take to heal and close. When I asked the doctor about how long Dad would have to abstain from eating and drinking, I was shocked when he said that Dad couldn’t eat anything for 4-6 hours, and then he should consume only Nepro until tomorrow. Today was the second time in four months that I had been amazed at the speed in which some of our body parts could heal. Dad’s trach stoma had healed in two days, and now his stomach would be ready to consume liquid in six hours. The epidermis doesn’t heal nearly as fast. I have had paper cuts that took three times as long to heal.

coffeeCupWe had driven to the doctor’s office in two cars. After the appointment, I helped my parents into their car, drove to Starbucks for some coffee, and then started my drive to Houston at 3:19 P.M. The traffic was relatively light, but I was feeling drowsy when I reached Waller, approximately 40 miles from home. Fortunately, Waller had a Buc-ee’s, one of the best rest stops in Texas. I stopped to stretch my legs and buy another cup of coffee. As I walked toward the exit, I met a wall of teenagers. Five buses had just unloaded more than 100 kids. I thanked my lucky stars for my perfect timing.

I got home shortly before 6:30 P.M.

April 14. According to Mom, Dad didn’t experience any problems during dialysis today. Although his blood pressure was a little low, it was not low enough to require midodrine to elevate it. He still complained of back pain, but he didn’t feel any discomfort at the site of his PEG stoma.

I asked Mom if Dad had tried to find the thrill on his arm every morning as he had been instructed by his surgeon, and her response was not what I had hoped. She said that they often have trouble finding it and that it’s not as strong as they would have thought. I told her to ask the dialysis nurses about it and that it’s too important to ignore. She agreed that asking the dialysis nurse was a good idea and agreed to ask one of them on Saturday, two days from now.

When the home care nurse stopped by, she said that she thought that Dad might be suffering from adhesions. I can’t imagine how she came to that conclusion, and Mom never mentioned where these adhesions might be located or what the nurse suggested that we should do about them. On a positive note, Dad’s vitals were good. Evidently, this nurse had come by the house about three months ago and was impressed by Dad’s progress since then. Before she left, the nurse helped Dad and Mom find the thrill on Dad’s fistula.

pegOutCross2April 15. Kristen, Dad’s swallow therapist, stopped by for her final session with Dad. Before she left, she said that Dad could start trying to swallow his pills. She encouraged him to start with very small pills and coat them in applesauce. Dad had been crushing the pills and mixing them with applesauce. Evidently, some of the pills tasted vile, so being able to swallow them would be a welcome change. Still, the thought of his swallowing pills made me nervous. I had been taking liquid vitamins for several years, and I suggested to Mom that we should ask Dr. Martin if Dad could swallow the pills with the liquid vitamins. When mixed with water, the liquid was a thickened liquid and quite slippery, which I thought might ease swallowing.

April 16. Dad had dialysis this morning. According to Mom, they removed about 1,500 ml of fluid. After a morning of running errands, I started my drive back to Temple, leaving my husband on the links with his golf buddy.

The highway from Houston to Temple passes through small towns, many of which get their revenue from speeding drivers. After my numerous trips to Temple, I knew when to slow down. Unfortunately, I wasn’t paying attention and resumed the 70 MPH speed a tad too early. I was stopped just outside of Somerville and got my second warning since Dad’s hospitalization last May. warningWhen the very nice officer handed me my driver’s license and warning, he advised me to watch my speed today. Because of several festivals in the area, there were many more patrol officers monitoring speeds than usual. As I eased back onto the highway, I noticed that I had stopped just a few yards shy of the posted 70 MPH sign. After setting my cruise control at 72 MPH, I arrived in Temple at 2:03 P.M.

With some assistance from Mom, Dad prepared a spaghetti dinner. Unfortunately, shortly after our nice dinner, Dad and I had another knock-down drag-out argument about his health and attitude about taking care of himself. Unlike so many other times, we eventually had a meeting of the minds and we agreed on a plan for managing his pain and boosting his protein intake.

April 17. Dad didn’t feel like going to church today, and the weather was dreary. The three of us enjoyed a nice breakfast of homemade cinnamon rolls, and then I worked on my computer until Mom and I left for church.

pegOutCross1After the church service, we mentioned to our friend Sue, who was also the nurse practitioner at the dialysis center, that Dad was still experiencing a lot of pain. She said that she would order x-rays for him. I also asked her about medical alert bracelets for dialysis patients with fistulas. For the rest of his life, he can never have blood drawn or his blood pressure taken on his left arm. She said that she thought that we could get him such a medical bracelet.

After a yummy lunch of grilled cheese sandwiches, Mom and I went outside to cover up some cantaloupe seedlings. We were expecting stormy weather, and she wanted to protect the young seedlings so that they wouldn’t drown. After watching the depressing evening news and eating dinner, we played Oh Hell, and Mom beat Dad by three points.

April 18. Dad had a 10:00 A.M. post-op appointment with Dr. Jaffers, the surgeon who had built the fistula in Dad’s left arm. While waiting for the doctor, Dad vomited in the exam room. According to Mom, he had just taken his morning meds before we left the house. The last time that he vomited, he had just taken his meds on an empty stomach. Other than the vomiting in the exam room, the doctor thought that Dad was healing well and that his fistula should be cured and ready to use during hemodialysis by early June.

pegOutCross3I thought that we also had an appointment for x-rays, but when we arrived in the radiology department, Dad was not on their schedule. I texted Sue because she had told me that she would enter an order for the x-rays.  Evidently, she had encountered a problem with her computer, and then she became distracted and forgot to enter the orders. While we were in the radiology waiting room, the order appeared, and Dad was called by the technician after a short wait.

The x-ray process was painful for Dad. Although x-rays aren’t painful, getting up on the hard table, being repositioned on the table, and getting down from the table was painful. I hoped that these x-rays would show something useful and actionable.

During an afternoon meeting with my manager, I learned that she had accepted a position in another business unit. She had been a wonderful manager and very supportive while I’ve been working remotely from my parents’ house. The two of us had made a great team, and it felt like she was breaking up the band. Although I knew that this move would benefit her, I was a bit apprehensive about how it would affect me.

I stopped working at 5:00 P.M. for our happy hour. After a nice dinner of leftovers, we played Oh Hell, and I lost again.

rainBefore going to sleep, I called my husband in Houston. Evidently, Houston had received between 9-15 inches of rain, depending on the area of town. According to the news, this was the worst rain event since tropical storm Allison in 2001 and has been dubbed the Tax Day Flood. Stan said that our house was OK. He didn’t know how much rain we received at our house. All he knew was that our 5.5” rain gauge had overflowed.

 

At last: Fistula surgery day has arrived!

March 29, 2016. Today was a busy day. Mom and Dad were up early to get Dad to dialysis, and it was a full work day for me. At 8:15 A.M., I met Mom at the King’s Daughters clinic for her appointment with her PCP, Dr. Poteet. In reviewing Mom’s chest CT scans, the doctor said that a spot was visible on her CT scan and showed that she had some scarring in a few lobes. He thought that she might have a chronic infection (bronchiectasis). He wasn’t sure, but he thought that she might need a bronchoscopy to get an accurate diagnosis.  He referred her to a pulmonologist at Scott & White. Because King’s Daughters and Scott & White could not share files, he told her to go to the King’s Daughters Surgery department and pick up a CD of her CT scans, which worked out well because I also had to pick up a CD of Dad’s CT scans. When I returned to the house, I called Scott & White and made an appointment with Dr. Mike Martin for Dad. Our friend, Sue, had recommended that we use Dr. Martin as a PCP for Dad. The earliest appointment I could get was April 25, almost a month from now.

surgeryCross3I spoke with Dana and then Julie at the Scott & White Speech Pathology department about my concerns about Dad’s surgery and the anesthesia. Julie spoke with Dr. Kyla Sherrard and told me that during recovery he’d have to drink some water. If he couldn’t handle it, the issue would be escalated to their department. She added that they would have a dysphagia screener in recovery. I ended my call with them feeling a little bit more prepared. It seemed to me that everyone involved with speech pathology was a rock star. From the person who answered the phone, to Dr. Sherrard, and all of the therapists, they all seemed all in for their patients.

March 30.  Not so busy as yesterday. After Dad woke from his afternoon nap, Mom drove him to the barber for a haircut. This barber had been in business for many years and knew most of the movers and shakers in Temple. Temple had more movers and shakers than one might think. Drayton McLane, the former owner of the Houston Astros, lives there. Probably more so than in a salon, gossip and stories were shared in the barber shop. Since Dad’s return home, Dad had shared some stories of his journey and news about his upcoming surgery. While Dad was there, his barber gave him the name of his surgeon.

surgeryCross2A few days ago, Dad and I had created a recipe for ham loaf, and tonight we prepared it for dinner. Dad also wanted carrots for dinner, and I found an interesting recipe in Mom’s cookbook. My parents had had a good friend who used to serve us ham loaf every time we ate at her house. Mom had never prepared it, and Dad and I were anxious to see if we had created a dish that she would like. Dad and I liked it, but it was a bit high in sodium, which wasn’t good for Dad. We decided, and Mom agreed, that it would be a good use for leftover ham.

March 31. Dad had an uneventful start to the day.

During my one-on-one meeting with my manager, she told me that she was contemplating taking a position with a different business unit in the company. I hated the thought of her leaving. We had a good working relationship, and I considered her to be a friend.

It was a beautiful afternoon. Mom and Dad took a walk out to the garden and then sat on the patio. I fixed our drinks, and we had our happy hour outside until 5:30 P.M. We finished watching the news before Mom and I started to fix dinner. Because we got a late start on dinner, we opted for a simple meal, like leftover meatballs and baked beans.

surgeryCross1We played cards after dinner. Mom and Dad went to bed early so that they would be well rested for Dad’s fistula surgery tomorrow. When I went to the office to shut down my computer, I became distracted with work and didn’t get around to calling Stan until after 9:00 P.M. This time might not seem late, but whenever I deviated from my schedule—calling later or earlier—my husband was concerned that something was wrong. Living on pins and needles had become our new normal.

April 1. I was part of the decision-making process to choose this date, but now that it was here, it seemed that April Fool’s day wasn’t a good day for surgery.  I was up at my regular time and ate breakfast at 4:00 A.M., about 30 minutes before Mom and Dad woke up. Mom ate a small breakfast, but because he would be having surgery in a couple of hours, my father was NPO.

surgeryCross3We left home for the hospital at 5:30 A.M. in a drizzly lightning storm. We arrived at the Day Surgery waiting room and admissions area a couple of minutes after 6:00 A.M., just beating the morning rush at the check-in desk. Dad was admitted, and we were on our way upstairs to Day Surgery before 6:30 A.M. The nurses and anesthesiologist were great, and they took time to listen to my concerns about Dad’s history of dysphagia and aspiration. I wondered how many people I pestered in my quest to ensure that Dad came through this surgery without any post-op challenges or relapses.

When the nurse wheeled Dad to surgery at 7:30 A.M., Mom and I returned to the waiting room. As usual, the waiting room was unbearably cold. While we waited, I took a few walks around the hospital. It’s a big place, and as much as I hated being here, I was in an environment that had become familiar.

When we arrived in the waiting room, the scheduled time of Dad’s surgery was 2:55 hours, and that time turned out to be accurate. Dr. Wiggins, Dr. Jaffers’s resident, called a couple of times during Dad’s surgery to let us know that everything was proceeding well. When the surgery was over, Dr. Jaffers met with us in a consultation room and told us that the surgery had gone well and gave us some instructions for Dad’s post-op care. As he left, the doctor told us that Dad would be in recovery for about 90 minutes. Mom and I decided to use that time to go home so that we could change into some warmer clothes and eat a hot lunch.

surgeryCross2As we pulled out of the driveway to return to the hospital, I received a call on my mobile phone that Dad was out of recovery and waiting for us in Bay 33. When we arrived, his nurse, Danielle, was giving him pudding and water. His dressing seemed pretty bloody. Danielle said that she had changed it once, but she thought that the bleeding had now stopped. She didn’t seem inclined to change it again, and for reasons that I’ll never understand, I didn’t ask her to change it. While we waited for the transportation personnel to take Dad downstairs, Mom helped Dad change out of his hospital gown and into his street clothes. After we arrived home at 2:00 P.M., Dad ate some Cream of Wheat, and then took a nap. I was relieved that he seemed to have come through the surgery unscathed and that my concerns had been unfounded.

Mom ran some errands, and I logged on to work while Dad napped. I woke him at 4:15 P.M. when Mom arrived home from shopping. As soon as he sat up, it was evident that his bleeding had not stopped. I was alarmed when I noticed that his shirt was soaked in blood and that the bedspread held a pool of blood. I cursed myself for not insisting that Danielle change Dad’s dressing so that we could have been certain that the bleeding had stopped before we left the hospital. I started calling numbers on his discharge papers until a human answered the phone. Wanda told me that I should call a different number, but I told her that she had been the only person who had answered the phone, and hers was the last phone number on my list. I took a deep breath as she told me that bleeding from the fistula was a serious problem and that the bleeding had to be stopped. While she put me on hold, she started working the problem and then told me to bring Dad to the emergency department. She would call Dr. Jaffers and have his resident meet us there. Fortunately, Dr. Jaffers was still at the hospital performing similar surgery.

surgeryCross1Before we left the house, Wanda called me and said that we should bring Dad directly to the Day Surgery department on the second floor. When we arrived, the nurses couldn’t understand why we were there and told us to go to the waiting room on the first floor. As we entered the waiting room, we saw a familiar face. Sheila, who had been our contact at Interim Health Care (the hospice company that we chose for Dad), was waiting for her nephew to get out of surgery. She was one of the nicest people that you’d ever want to meet, and she commented on how glad she was to see Dad’s continued progress, which was a far cry from hospice.

After we were directed back upstairs to the Day Surgery department, Dr. Wiggins checked Dad’s incision site and applied a new dressing. She said that Dr. Jaffers wanted her to look for any signs of hematoma to determine if they needed to take Dad back into surgery. At this time, the bleeding had slowed, but not stopped, and Dr. Wiggins had Dad sign another surgery consent form in case more surgery was required. She tightened the dressing to apply pressure for about 40 minutes and then removed the pressure for 30 minutes to see if the bleeding would start again. I was concerned about Dad having to return to surgery because he had eaten just a few hours earlier. Fortunately, I guess, Dad vomited some of his lunch during our hour of waiting. The vomiting might have been caused by the anesthesia and was the only time that he was sick today. When Dr. Jaffers returned to the waiting room, he examined Dad’s incision decided that additional surgery wasn’t necessary.

surgeryCross2As I pulled the car into the driveway, a chime from my iPhone alerted me to an incoming text message. The text message from Stan informed me that he was in Cameron, about 30 miles from my parents’ home. He walked into the house while Mom and I were unwinding with a late happy hour. We served more of the ham loaf for dinner and finally got to bed at 11:00 P.M. For my peace of mind, I put the monitor back in my parents’ bedroom for this one night. I wouldn’t be able to sleep if I spent the night worrying about Dad.

This had been another danged long day of health care, and I hoped that Dad’s days of surgery were over.

Countdown to dialysis fistula surgery

March 23, 2016. For months, Mom had had a bad cough. It started last summer while Dad was in the hospital. The hospital rooms had been dreadfully cold, and the cold air seemed to have taken its toll on her. She had gone to her PCP, Dr. Poteet, about the nagging cough, and he ordered a CT scan. A couple of days ago, Dad’s PCP, Dr. Sarla Patil, had ordered a CT scan of Dad’s back. Through fortunate scheduling, they had adjacent CT scan appointments today and were able to go to the imaging lab together.

fistulaStar2Dad wanted to prepare his family-favorite Locke’s Lasagna for dinner, but he was in so much pain that he could barely lift his arms. I told him that I would stop work at 4:00 P.M. and help him fix dinner. Mom and I both helped him, so preparing dinner turned into a family activity.

I had hoped that we would hear from one of the doctors today with some test results, but no such luck. While we were playing Oh Hell, which Mom won, we started betting on which doctor would call first with CT scan results.

March 24.  From the time that he started having dialysis nine months ago, Dad had had problems with very low blood pressure during dialysis. The dialysis system works best when the systolic pressure exceeds 100. Sometimes removal of fluid was stopped when his blood pressure dropped, and in extreme cases, dialysis was stopped altogether. To remedy this problem, the doctor had prescribed that Dad take two midodrine pills before dialysis and then again at the halfway point, which would help keep the systolic pressure at a safe level. Today at halftime, his systolic pressure was 153. Without checking with the nurse, Dad took his second dose of midodrine. A few minutes later, his systolic pressure spiked to more than 170. After this little incident, the doctor advised Dad to take the midodrine only if his systolic pressure fell below 100. I just hated excitement during dialysis.

We finally received a call from Dr. Patil about Dad’s CT scan, which shed some light on the cause of his pain. Evidently, during Dad’s extended time in bed, he had developed severe osteoporosis. At some point during the hospitalization or recovery, he developed seven stress fractures in his back. His recent fall and the standing and sitting during church most likely exacerbated his condition, which triggered his extreme pain. Unfortunately, the doctor didn’t offer any suggestions to deal with the pain. However, she said that she was referring Dad to an endocrinologist. She probably assumed that we knew why she wanted Dad to see this specialist, but I had no idea what an endocrinologist could do for Dad’s back pain. Mom had yet to hear from her doctor.

ourCats
Peanut and Butter

During most of his trips to Temple, Stan had left our cats at home alone. This weekend, because Stan would be gone an extra day, I wanted our cat sitter to tend to them. I had been texting Vickie Lynn for a couple of days, but she had not responded. Because of our situation, I had not needed her services for several months, but we had known each other for over 10 years, and I couldn’t understand why she hadn’t responded to me. I finally went old school and called her home phone and left a message. I was completely blindsided when her husband called to tell me that Vickie Lynn had died from cancer four months earlier. He had taken over her pet sitting business and said that he would take care of our cats this weekend. I always felt unsettled when I learned that someone who I thought was among the living had in fact died.

March 25. At 2:00 A.M., something woke Mom and she noticed that Dad had slid about halfway off of the bed. It took some doing, but she got him back into bed. He’d been sleeping very close to the edge of the bed lately and he’d come dreadfully close to falling out of bed.

fistulaStar3Dad was still in a lot of pain. After 8:00 A.M., I called Dr. Patil’s office and asked her nurse about Tylenol and other pain management options for Dad. She said that she would text the doctor with these questions and then get back to us, but she never did. We’d now have to get through the weekend without knowing what drugs he could take for pain. Under normal circumstances, Dad would take something like Extra Strength Tylenol, but renal issues often determined what medicine he could take.

fistualPhotoStan arrived from Houston and immediately started doing yard work. Before the day was over, he had mowed the back lawn. During the afternoon, I took a break and the four of us drove a mile away from home to a huge lot that was filled with wildflowers. The lot was a favorite of the locals for wildflower photos, and I wanted to have a photo of the four of us among the iconic symbols of springtime in Texas.

After a yummy dinner of salmon and a broccoli, rice, and cheese casserole, which I prepared, we played Oh Hell, and Stan won.

March 26. On dialysis days, Mom and Dad woke up at 4:00 A.M., but this morning I was the first one in the house to wake up, although I had planned to sleep in. When I checked on my parents, I noticed that Dad was again so close to the edge of the bed that he was practically falling out of bed. Moving around in bed was painful, so at night he would lie down close to the edge so that he would not need to move much when he wanted to get up.

fistulaStar1Although his back pain was slowing him, my parents left for dialysis on time, a few minutes after 6:00 A.M. Stan was still sleeping, so I decided to catch up on a little work. I had just sat down with a cup of coffee when the phone rang. I don’t like 7:00 A.M. phone calls, especially from my mother when she’s with Dad at the dialysis center. I was relieved when I learned that she was calling to tell me that she had left the garage light on when she left. As I turned off the light, I had to laugh to myself because I knew that Dad had noticed the light and had told her to call me.

Stan woke up shortly before Mom got home. Mom told us that Dad had gained about 2 kg since Thursday, so they planned to remove 2,000 ml of fluid today.

wildflowersCemeteryAfter breakfast, Stan and I drove to the nearby town of Cameron to look for wildflowers. We didn’t find any in the place where I had seen them earlier, but we stumbled upon an old cemetery that had millions of flowers. I had intended to take some infrared photos on the way home, but clouds materialized and blocked the sun. Infrared film photography requires strong sun. It was a running joke that clouds would materialize whenever I pulled out my tripod.

After lunch, we helped Mom plant tomatoes in my parents’ vegetable garden, and Stan did some more mowing and chores around the yard. Stan wouldn’t be here tomorrow evening for Easter dinner, so we had our Easter dinner tonight. Mom prepared a ham and I roasted a variety of root vegetables. Mom topped off the meal with a yummy homemade strawberry pie.

We played a cutthroat game of Oh Hell. I won, but Mom was a close second. As he was getting ready for bed, Dad announced that he wouldn’t be attending church tomorrow because of his back pain. Mom and I were disappointed. We had scheduled Dad’s fistula surgery for next weekend so that he wouldn’t be prevented from attending Easter services by any post-operative problems. So much for advance planning.

March 27. I couldn’t seem to catch up on my sleep. This morning, a sharp cramp in my right leg woke me up at 5:00 A.M. As long as I was up, I decided to work on my laptop in the living room. While I was there, I overheard an unsettling conversation in my parent’s room. Evidently, my father’s pain was intense, and it sounded like he was suggesting that he stop dialysis because he couldn’t live with the pain.

fistulaStar2When Mom came out of their bedroom, she told me that Dad wanted us to make an appointment with Dr. Patil to see if there was anything that she could offer him that would help him to manage his pain. Dad had also said that if she could not see him this week, we should try to get an appointment with someone else.

When Mom and I left for church, Stan and Dad were playing cribbage. The church was lovely, and the service included a baptism. Consequently, the service ran long and we didn’t leave for home until 12:30 P.M. After the service, I asked our friend Sue if she could recommend another PCP for Dad. Sue is a nurse practitioner with Scott & White dialysis center and immediately recommended her friend, Dr. Mike Martin.

Stan and Dad were still playing cribbage when Mom and I returned home. Stan left for Houston a short time after lunch, and Mom, Dad, and I tended to the garden and watered the new tomato plants. Sue had told us that we could give Dad Tylenol for his pain. When I checked their medicine cabinet, I found a bottle of Tylenol; unfortunately, it had expired three years ago. I drove to Walgreens and purchased something a bit more current.

fistulaStar3We watched the news, which was growing more depressing with each passing day. We didn’t play cards tonight, but Dad and I created a recipe for ham loaf by combing recipes and adding a few extra ingredients for good measure, and we intended to try it on Wednesday. Dad had been collecting recipes—some of his and some of mine. I enjoyed working with him in the kitchen and planning meals. It took me back to our time together during my childhood. Sometimes my mother traveled for the League of Women Voters and left Dad and me to fend for ourselves. Before she left, every meal was planned and when she returned home, there wasn’t a leftover in sight.

March 28. It was a workday for me, so I was up early. When I heard Mom get up, I asked her about Dad, and she said that she thought that he had had a better night’s sleep last night. She said that he had been up a couple of times during the night, but at least he wasn’t in a ball at the bottom of the bed or hanging on the edge of the bed when she got up.

When Dad got up, he announced that he would take two doses of Tylenol today instead of the three that had been suggested. I wasn’t sure why he wanted to bear the pain, but it was his pain and his decision.

Mom left at noon today to attend her book club. While she was gone, Dad took a nap and then he and I walked out to the garden to water their young tomato plants. After tending to the garden, we walked around the backyard and checked out all of the fruit trees. The blossoms were starting to fall and you could see hints of the fruit that would take their place. Unless we got another freeze, the loquat tree might bear some fruit.

Mom returned home from her book club around 4:15 P.M., and Penny, the new Home Care nurse, arrived 15 minutes later. When I expressed my concerns about Dad’s ability to swallow after surgery, she said that we should insist that he be coherent and able to swallow before he could leave the hospital, especially on a Friday. After pestering every medical person that I encountered about Dad’s possible post-op challenges with swallowing, I was beginning to feel like we might be able to ensure that we might have some control over the situation.

Only four more days until Dad’s surgery.

Photo by SpaceX on Unsplash

 

Feeding tube: removal delayed!

March 10, 2016. When I was at home in Houston, I still woke up at 3:30 A.M., but unlike my Temple workday, I had to make myself presentable and drive to the office, so I didn’t start working until 5:30 A.M. As I drove into the parking garage at the office today, I suspected that Dad was finishing his breakfast of Cream of Wheat and nasty-tasting cocktail of crushed pills and applesauce. As part of the daily induction process at the dialysis center, the nurse would ask if he’d had any falls since the last visit. Once again, Dad would have to declare that he had fallen, although it wouldn’t have taken a detective to determine that something had happened to him.

During my first full day in Houston, I worked until about 3:30 P.M., and then ran some errands on my way to my night class at Glassell. By the time that I arrived at the school, I had run out of time to call Mom to see how Dad had fared during dialysis. I hadn’t heard anything from her, so I had to assume that they both were OK.

fistulaDrawingI had spent a lot of time during the day thinking about Dad’s upcoming fistula surgery and the problems that he’s had coming out of anesthesia. I was glad that we had chosen the April 1 date, but I was beginning to have second thoughts about scheduling surgery on a Friday. Should anything go wrong after his surgery, we’d be at the mercy of the emergency room unless the surgeon was available after normal office hours.

March 11. When I called Mom at 8:00 A.M., she told me that she and Dad had slept in and had just finished eating breakfast. Evidently, Dad’s skin tear kept seeping blood yesterday. When she changed the dressing again this morning—the third day since his fall—she thought that the bleeding had stopped. I had never seen skin tears like his before. I was no expert, but this long tear seemed like it would take a long time to heal. As I had suspected, when Dad walked into dialysis yesterday, the nurses commented on his face, and instead of asking if he had had any falls, they asked how he fell.

During my call with Mom, I shared my concerns about Dad and his history with post-op delirium from the anesthesia. We decided that we would discuss our concerns with Dr. Patil, Dad’s PCP. I also suggested that we speak with Dr. Jaffers, the surgeon, so that he might speak in advance with the anesthesiologist. I also told her that I wanted to reschedule Dad’s Saturday dialysis session to Monday, April 4, in case he wasn’t well enough to make his session the day after surgery. Mom said that she would talk to Sue, the dialysis nurse practitioner and our friend.

ourCatsTonight was Stan’s regular poker game, so I spent the evening on the couch with my cats. When I was home in Houston, I spent most of my time running errands, doing laundry, and switching out my clothes to accommodate the changing seasons. I would have preferred some downtime with Stan, but the cats were good company, albeit not great conversationalists.

March 15. Dad had 2,000 ml of fluid removed today during dialysis. After talking with a few people at the dialysis center, he decided that he didn’t want to impose on anyone, so he decided that he would not ask to change either his surgery date or dialysis schedule. This news upset and frustrated me. During his past two surgeries last year, Dad had suffered from post-op delirium for a minimum of two days. Because he had to concentrate to swallow correctly, I was afraid that he might aspirate during a delirious state. However, as stubborn and determined I was, I was no match for Dad when he made up his mind.

tubefeed3March 16. I worked from the Houston office again today. Back in Temple, Dad had an appointment with the Tube Clinic at the gastroenterologist’s office to have his PEG tube removed. I was eager to talk with Mom to hear how Dad had handled the procedure. However, when I spoke with her, she said that Dad did not have the PEG tube removed today. Instead, the nurse told Dad that he would first need to pass another Modified Barium Swallow Study (MBSS). This requirement was news to us. Because Dad had already passed an MBSS earlier and had been eating for a month, we thought that he had met his requirements to have the PEG tube removed. Unfortunately, the x-ray department at the hospital didn’t have any available appointments today for completing the study.

After Mom and Dad returned home from the doctor’s office, they received a call from the x-ray department at the hospital. Because of a last-minute cancellation, they could administer the MBSS today. Mom and Dad returned to the hospital for the test, and he passed the solids and thickened liquid portion, but did not do well with thin liquids. The doctor said that he would require additional therapy before she could recommend removal of the PEG. Dad couldn’t get another appointment with Dr. Pfanner’s office until after his surgery date, which meant that Dad would have the PEG until sometime after his fistula surgery. I knew that Mom and Dad were disappointed, but I was secretly relieved. Not worrying about Dad’s ability to swallow after surgery seemed like a big win to me. It’s true; God works in mysterious ways.

tubefeed4I stayed in Houston for a couple more days. I didn’t get much information from Mom about Dad’s condition during my daily calls. When I spoke with her on Friday, March 18, she told me that she would give me more news about Dad’s appointment when I returned to Temple on Saturday. Unlike me, she didn’t come to the phone armed with copious notes about the day’s activities, so our in-person chats were usually more productive.

I had a busy Saturday morning in Houston and didn’t start my trip back to Temple until shortly before noon. Dad was still napping when I arrived at 2:00 P.M. After I had been there for about an hour, I opened the front door and found a package that was addressed to me. Because Dad was taking antibiotics, the gastroenterologist had prescribed some probiotics for Dad, which I had to order from Amazon. The package was shipped in cool packs to keep the bacteria cool. I had no idea how long the box had been sitting in the sun, but the package was barely cool when I opened it. I hoped that the expensive bacteria were still viable.

When I asked about Dad’s additional swallow therapy, Mom said that she had not heard from anyone at the hospital.

Stan couldn’t join us for the weekend, but Mom, Dad, and I still enjoyed a game of Oh Hell.

bluebonnetsMarch 20. This morning got off to a good start. The weather was beautiful, and the Texas bluebonnets were in full bloom. The three of us slept well, enjoyed a great breakfast of eggs and homemade English muffins, and then we went to church.

I had hoped that after church we could drive 30 miles to the neighboring town of Cameron and take some family photos amid the flowers. Unfortunately, Dad said that he was not feeling well and just wanted to stay at home for the remainder of the day. I was a bit of a poor sport about having my plans dashed, but he was adamant that he would not leave the house again for the day.

Thinking back on the day, I suspect that all of the standing up and sitting down during the church service affected his back. He didn’t say anything at first, but as the day progressed, he complained about sharp pains.

March 21. I was more sleepy than usual when my iPhone woke me this morning. I dragged myself out of bed shortly before 4:00 A.M. and went downstairs to my parents’ office to work. Dad was in a lot more pain today than yesterday, but he couldn’t seem to pinpoint the location more than just “somewhere in the middle.” I poked around on his belly to see if he had any rebound tenderness, which could be a sign of appendicitis, but that didn’t appear to be the problem. The pain also seemed too low to be his gallbladder. After eliminating all of my past maladies, I left him alone, and he stayed in bed until almost 8:00 A.M. Fortunately, Dad already had an appointment scheduled today at 1:30 P.M. with Dr. Sarla Patil, his PCP. I called her office to see if we could reschedule the appointment to an earlier time, but they didn’t have any earlier times available.

tubefeed2In addition to our concerns about Dad’s abdominal pain, we had a list of questions for Dr. Patil. At the end of the exam, she said that she thought that Dad would benefit from some additional physical therapy and referred Dad to another month of home care. She couldn’t tell what was wrong with Dad from an office examination but decided not to pussyfoot around, and she ordered a CT scan for Wednesday morning, two days from now.

She also said that I was overly concerned about Dad and the anesthesia, and I hoped that she was right. Although Dad’s skin tear from March 8 was still seeping, she said that it was healing. She added that if she were to prescribe an antibiotic, it would be the one that he was already taking.

On the way home from the doctor’s office, we stopped by the hearing aid office so that Dad could have his hearing aids cleaned, which would improve the communication in the house.

After we returned home, I worked for another hour, and then I stopped for happy hour. After our dinner of beans and franks, we played Oh Hell, and I won.

tubefeed3My husband’s cousin called me, thinking that he was calling Stan. Stan’s mother was one of 12 siblings. Stan’s uncle, the last remaining sibling, was now in hospice. I called Stan to pass along this sad information. Stan’s uncle was 86—one year younger than my father.

March 22. Dad was still in pain when he woke up this morning. Although he was moving slowly, he left for dialysis only a couple of minutes behind schedule. When Mom returned home at 7:00 A.M. from dropping Dad off at dialysis, I took a break from work to have breakfast with her. We turned on the television and learned about the bombings in Brussels; ISIS claimed responsibility, killing 31 people.

tubefeed1I called the swallow therapy department at Scott & White Memorial Hospital. After Dad had partially aspirated thin liquids during his last MBSS, Dr. Sherrad wanted to meet with him to show him some exercises, and I wanted Dad to get started. Because Dr. Patil had ordered more home care and additional physical therapy, I suggested to Dr. Sherrad that we have Dad’s PCP add swallow therapy to her order. Dr. Sherrad also thought that the additional swallow therapy would be a good idea. I called Adan, our friend who managed the home care therapists, to see if he had received the order. He hadn’t but said that when he did, I could call the PCP’s office and ask her to send him the referral for swallow therapy.

Everything seemed to be coming together and I was glad that Dad would be receiving more physical and swallow therapy. Although I was glad that Dad would still have the PEG during his surgery, we were all ready to move past this time in his life and be finished with the feeding tube.

Photo by Vladimir Kramer on Unsplash

Another fall! A caregiver’s nightmare.

March 5, 2016. I drove Dad to dialysis this morning. He weighed in at 69.0 kg (151.8 lb), and the nurse told me that he would have 1,900 ml of fluid removed. From what I surmised, the doctor had established 68 kg (149.6 lb) as Dad’s dry weight. Dad took his walker with him to dialysis, but before leaving the house, Dad had breezed around the house in the wheelchair. When Mom picked him up, he weighed 67.6 kg (148.7 lb). After returning home, he walked for the rest of the day, using only his cane, and he did extremely well.

2016_mar_12While Dad was at dialysis, Mom baked a cake and I prepared Locke’s Lasagna, Dad’s fabulous recipe for spinach lasagna. When I was finished, I spent a bit of time outside, taking photos of the backyard. My parents’ fruit trees were in bloom, and the white and pink flowers made the trees appear very delicate. When I moved in for close-ups, I noticed that the bees were also enjoying the blossoms.

Shortly after Mom left to pick up Dad, my friend Rhoda called and said that she and her husband Mike had not yet left Houston. After all the brouhaha last night about our expected guests arriving for lunch and how that was upsetting to Mom, it turned out that she wouldn’t have to worry about serving lunch after all.

anotherFallCross3A few minutes after Mom and Dad returned home, Stan arrived from Houston. The four of us ate lunch and then Stan and Dad played cribbage. The weather was nice, so while I waited for our friends to arrive, I took a walk around the neighborhood. My parents were very fond of Rhoda and Mike and looked forward to seeing them again. Rhoda and Mike arrived mid-afternoon, and after we finished all of the greetings, I commandeered Rhoda for some software assistance, leaving Mike, Stan, Dad, and Mom in the sunroom to visit.

While the lasagna baked, we enjoyed an extended happy hour and tried to catch up on the past few months. I was pleased to see that Dad ate a large portion of lasagna and a pretty large piece of cake for dessert. After dinner, the six of us played Oh Hell.

When we finished our game, Dad prepared his concoction of meds and applesauce. My parents said goodnight to us shortly after 9:00 P.M., and Rhoda and Mike left a few minutes later. My parents’ house could accommodate several guests, but because our house was still transitioning from a homecare environment, our friends opted to stay at a local hotel.  Stan and I cleaned up the kitchen and went to bed around 10:00 P.M.

March 6. The four of us were up and at ’em by 6:30 A.M. Stan and my father went to Lowe’s around 8:00 A.M. to buy light bulbs, which provided Dad with a good walk. Stan let him out at the door, but Dad walked around the store and then back to the car with the assistance of only his cane.

MOULTRIE DIGITAL GAME CAMERARhoda and Mike arrived for breakfast around 8:45 A.M. Mom and I prepared waffle batter and link sausage, and Dad ran the waffle iron. It was another nice meal, and Dad ate his fair share of waffles, and I restrained myself from reminding him to eat without talking. My parents liked to leave leftover waffles outside for woodland creatures, like foxes and possums, but the six of us didn’t leave enough for a mouse.

I had hoped that Rhoda and I could escape for a photo safari in a neighboring town, but the weather was too dreary for black and white film photography. At 10:30 A.M., I was itching to get away for a visit with Rhoda, so we decided to hit the road and hope for some sun. About 30 minutes later we arrived at the neighboring town of Cameron, and the clouds thinned out and delivered a sunny day and nice clouds. We found some abandoned and storm-damaged homes and spent some time getting close to the structures, most likely bordering on trespassing. We had such a great time that we got a little carried away and lost track of time.

anotherFallCross2While we were gone, the guys and Mom watched part of a golf tournament on television. After eating such a large breakfast, Stan ordered salad takeout from Olive Garden for our light lunch. He ordered five servings and we still had tons of leftovers. Stan had to get back to Houston to care for our cats, so he left shortly before 3:00 P.M. The remaining five of us spent the rest of the afternoon visiting until happy hour. During happy hour, we shared some of our stories about the trials and tribulations that we had faced during the past few months. Unfortunately, Dad’s stories weren’t unique. Rhoda also relayed some disturbing stories about her father’s time in the hospital during the past year. We had a late dinner of tacos, which didn’t leave us any time for cards this evening.

Our friends left shortly after 8:30 P.M., after what seemed like a very short visit. I think that having our friends visit for the weekend was the perfect tonic for my parents, and for me. Happily, I would be back in Houston during the next weekend, and Stan and I would get to visit with our friends for two weekends in a row.

March 7. I was up early for work, but after having stayed up past my bedtime last night, I felt like I could have slept for another hour. Mom finally woke Dad after 6:00 A.M. After all of his physical activity during the weekend, he was pretty tired.  I knew how much he preferred zipping through the house in the wheelchair and was pleased that was starting out the day with the cane and not the wheelchair.

anotherFallCross3Although I was pleased with his physical activity, I noticed that he seemed breathless when he ate, and he often had a runny nose after meals. If I remembered correctly, Kristen, Dad’s swallow therapist, had mentioned that a runny nose was a sign of aspiration. After watching him like a hawk, I decided that he seemed OK, so maybe I was worrying unnecessarily, which seemed to be my modus operandi.

Mom baked some pineapple banana bread today, and during lunch, we watched Peyton Manning tearfully retire from football. I put in another full day of work and was able to take a walk before lunch today. I stopped working early so that I could move a couple of our many floor mats to our office for Dad. As long as we had a supply of them on hand, we might as well use them to protect the carpeting in the office.

We had Sloppy Joes for dinner, but Dad ate only ½ of his sandwich. He had been doing pretty well with his intake the past few days and was drinking the Ensure and Nepro, so I didn’t pester him to eat more. After dinner, we played Oh Hell again, and I was tonight’s big winner.

By 8:30 P.M., Dad had crushed and consumed his meds with applesauce, and I was ready to call Stan five minutes later.

March 8. It was dialysis day for Dad and we were all up early today. The weather forecast didn’t bode well for today. Although stormy weather was in the forecast, Mom and Dad left for dialysis before the rain started. Shortly after Mom returned home, the weather turned bad with tornadoes in nearby Lampasas and San Saba.

anotherFallCross2When it was time to pick up Dad from dialysis, the weather was terrible, and I decided that I should make the trip to the dialysis center. The roads had terrible ponding and mild flooding the entire way. About a block from the dialysis center, the police had blocked the road and I had to go around deep water by traversing a parking lot. When I arrived, Dad said that he was relieved and glad to see me. By the time that Dad was ready to leave, approximately 30 minutes had elapsed. When we walked outside, I was amazed to see that the rain had stopped and the sky had cleared. As I drove back to the house, I could not believe how much the water had receded. I could only describe how flooded the streets had been because there was no evidence of the terrible conditions that I had countered during my trip to pick up Dad.

When Dad had arrived at the dialysis center, he weighed 69.1 kg (152 lb). After 1,400 ml of fluid was removed, he weighed 67.7 kg (149 lb). He had eaten quite well during the weekend, and I was relieved that he had not retained more than the usual amount of fluid.

I worked until 4:30 P.M. and then picked up my film camera and walked about a ½ mile down my parents’ street. When I returned, Dad was at the bar, preparing a drink for my mother. He then took his soft drink and walked into the sunroom where Mom and I would join him in a matter of moments.

anotherFallCross1It was then that we heard the sound of trouble. Neither Mom nor I witnessed what happened, but we think that Dad fell while stepping into the sunken sunroom. He hit his mouth on the wicker furniture that held Mom’s collection of African violets. He and a few violets were damaged, but nothing too serious on either front. His lip was pretty bloody, and we fetched a cold compress for him to help control the bleeding and swelling. It was then that we noticed the dandy skin tear on his leg. Fortunately, we still had ample first aid supplies. I bandaged up his leg and cleaned up his lip. For a few days, he would look like he had been in a fistfight.

After dinner, I showed Mom and Dad how I dispensed the pills in the two-week pill organizer. It was 8:00 P.M. when we were finished with that activity, but Dad wasn’t ready to go to bed until we played a game of Oh Hell.

March 9. The weather was pretty bad overnight. My bedroom had windows on three sides and the thunder and lightning woke me up and interrupted my sleep during most of the night. I might have fallen back to sleep had the pill alarm not gone off in the kitchen at 12:52 A.M. I had purchased the reminder clock to help Dad remember when to take his pills. My parents didn’t like the clock, and I’m pretty sure that I’m the only one who was disturbed by it. I had set the alarm time correctly, but the clock time was off by 12 hours.

Dad’s leg bled some overnight, so I had to bandage it again this morning. I worked until it was time for us to go to the clinic at S&W to meet with the fistula surgeon, Dr. Jaffers.

anotherFallCross1During Dad’s last plan of care meeting, we had all decided that Dad would have the graft procedure, which uses artificial tubing and not the patient’s vein. However, Dr. Jaffers convinced us that we should take the fistula route. If he decided during surgery that the graft would be the better option, he would fall back to that choice. His assistant offered us two dates for the surgery: March 25th or April 1st. Because the available time on the March date was in the afternoon, we thought that we should go with the April 1 option. Besides the fact that I don’t believe in scheduling surgery for the afternoon, Dad didn’t recover well from anesthesia. I wanted to ensure that he could spend a few hours at the hospital if he experienced delirium or hallucinations. March 25 was also Good Friday. If Dad experienced side effects from the anesthesia or didn’t feel well two days after surgery, he would not be able to attend church on Easter.

This surgery was a big deal, or at least it was for me. Dr. Jaffers would surgically connect an artery to a vein in Dad’s left arm, which would then be used to remove and return blood during dialysis. When the fistula was cured, Dad would have the dialysis port removed, enabling him to shower and swim without protection. Dad wasn’t thrilled that he would be stuck with two needles three times a week or the fact that this procedure implied that he would need dialysis for the rest of his life. However, the fact that he could have the surgery was a sign that he was getting stronger.

anotherFallCross1By the time that we got home, it was well after 1:00 P.M. By the time that I finished packing for my trip home, ate a quick lunch, and reviewed some of the medical tasks with Mom, it was after 3:00 P.M. I finally left for home at 3:20 P.M. The weather between Temple and Houston was miserable, but the traffic wasn’t bad until I got about 10 miles from home. By the time that I finally arrived home at 7:00 P.M., I was good and tired and very glad to see Stan and my kitties.