Life without the PEG

April 19, 2016. In the days following the removal of Dad’s PEG, a sense of normalcy seemed to descend on my parents’ home. Dad still had dialysis sessions on Tuesdays, Thursdays, and Saturdays, but we no longer had to deal with the PEG tube and the stoma, and Dad could get rid of his undershirts that we had customized to accommodate the tubing. Only the dialysis catheter still remained, and it would stay in place until the fistula was cured and ready for dialysis.

sansCross1The amount of fluid that was removed from Dad during dialysis seemed to fluctuate widely. On one day, they would remove 2,200 ml, and two days later they would remove only 1,200 ml of fluid, which was the minimum level. It was hard to believe that fluid retention could vary by a liter. We tried to ensure that Dad adhered to his renal diet and couldn’t understand the fluctuations.

I traveled back to Houston for a few days and was astonished by the high water that I saw on the drive home. The Little River, which is often barely more than a trickle, looked like a boiling ocean and extended the entire width of the bridge. I had often wondered why the bridge over this pissant river was almost a mile long, and now I knew. The Brazos River was shockingly high as well. The news about the rain had made the national news, but this drive home gave me a first-hand glimpse of its aftermath. I had heard that a portion of US290 had been damaged during the flood, so I exited to FM99, only to be turned back because the road was underwater. Fortunately, the damage to US290 affected only one lane, so the slowdown was minimal. I suspected that I would start seeing some flooded neighborhoods as I approached Houston.

sansCross2In 2004, my parents designed their current Temple home and contracted with Mike, the builder who had built their previous home, to turn their plans into reality. Several months before Dad entered the hospital in May 2015, the foundation cracked, causing cracks in the walls and the tile floors. A couple of weeks before Dad’s surgery, Mike repaired the foundation (at no cost to my parents). Mike had planned to let Dad contract his crew to repair the cracked drywall and tile when Dad returned from the hospital. Those plans were put on hold when Dad was discharged from the 148-day hospital stay to almost five months of home care. Not only would the work have been very disruptive, but Dad had a tracheostomy and could not be exposed to the fine dust from the tile work and drywall. Now, some 11 months later, the tradesmen had arrived and the final repair work was about to begin.

April 20. Today was my first day in the Houston office for the first time in a few weeks. On earlier trips to Houston, I had worked from my home office. It was nice to be back among my coworkers, some of whom I hadn’t seen in almost a year.

At 10:45 A.M., I received a text message from Sue, the dialysis nurse practitioner. I had contacted her earlier because Dad had been experiencing some irregularity, and I now never purchased any OTC medications without first asking her if they were safe for renal patients. In this instance, she told me that Dr. Issac, the nephrologist, recommended that Dad take Miralax. I passed along this message to Mom, and she said that she would have him start taking it.

2014_ 08temple_113Mom and Dad worked in the garden, and Dad decided to do some work on their irrigation system. After getting down on the ground, he couldn’t get up. Mom wasn’t strong enough to help him up, so she had him crawl over to the greenhouse steps, and from there he was able to sit and then stand up. I had no qualms about him getting on the ground to work in the garden, but it was important to have (stable) aids nearby that he could use to get back on his feet. Fortunately, their garden shed was next to the garden. He could also have crawled to the chairs on the patio, but he might have encountered some chiggers and fire ants on the way. Stan had seen a wagon in a gardening magazine that might be helpful to Dad, but we were fairly certain that Dad would not want us to order it.

Dad had a physical therapy session with Brenda today, but their session was cut short because of the pain in Dad’s back. Before she left, Brenda provided Dad with a list of exercises that she wanted him to perform before their next session. Dad wasn’t known for exercising between sessions, and I doubted whether he would do them.

April 21. It was another rainy day in Houston and Temple. We didn’t need the rain in Houston, and I didn’t like Mom driving Dad to dialysis in the rain. During dialysis, Dad had 1,200 ml of fluid removed.

sansCross3When I spoke with Mom, she said that Dad had gotten up on the riding mower and spent about 15 minutes mowing the backyard. Many years earlier, Dad had had some terrible back problems, and a doctor (probably a surgeon) had recommended back surgery. Like me, my father had a career that required you to sit all day, which is terrible for your back. After my parents retired to a farm in Colorado, he spent a lot of time working outside and riding his tractor, and he swore that the tractor fixed his back. I assumed that he was looking to his riding mower for similar relief.

April 22. Stan and I had planned to spend the weekend in Temple but decided to go a day early instead of our usual Saturday. I worked for about seven hours, and he did some chores around the house before we left for Temple in two cars. Stan left around 1:45 P.M. and I followed him about 15 minutes later, but I arrived about 15 minutes before him. Although I might have a tiny bit of a heavy foot, he made two stops along the way to my one stop.

The weather was fabulous in Temple, so we enjoyed our happy hour drinks on the patio. Because today was Friday, we had tacos for dinner. Stan and I often teased my parents about their mealtime conventions. You could always tell what day it was by the breakfast and dinner menus. After dinner, we played Oh Hell, and I won, which broke my current losing streak.

April 23. Dad often complained about having to get up at 4:45 A.M. to get to dialysis, but he almost always woke up earlier, and this morning was no exception. According to my mother, he was awake and out of bed at 4:00 A.M. He went back to bed at 4:30 A.M. and she then had to wake him at 4:45 A.M.

IMG_1747Stan and I took my car to a local garage for an oil change, and then we drove to the nearby town of Buckholts for a short photo safari. During my many trips to and from Temple, I had passed an old abandoned house that I wanted to photograph, but I had never had the time to stop. The weather was still nice and we were able to spend some time away from the house. On our way back to my parents’ home, Stan stopped in Rogers and purchased some doughnuts. He said that the doughnuts were for Mom, but I think that he used her as an excuse to buy them for himself.

After lunch, Dad and I started preparing a stew for tonight’s dinner. He had purchased the vegetables, so the stew was chock full of vegetables that we didn’t see when Mom shopped. While the stew simmered, I had Dad take an hour nap. Mom and Stan were slaving in the backyard. Mom worked in her garden and the courtyard and Stan mowed the lawn, trimmed some bushes, and treated fire ant hills.

sansCross3Both my parents made two disturbing statements today. Mom said that “it was a shame that my father had to end his life this way,” and Dad said that “it’s too bad that you have to have dialysis just to live.” I guess my perspective differed from my parents’. I was thrilled that he was here and that we were still able to have fun as a family. We’re the perfect example of viewing the glass as either half empty or half full.

April 24. I slept until I was awakened by the rising sun shining on my face. My room didn’t have curtains, but I rarely slept until sunrise. I finally got out of bed shortly before 7:00 A.M. and changed into my scrubs, which had become my new go-to early-morning clothes. Mom was downstairs, and I heard the familiar tone from the coffee maker that indicated that my coffee had finished brewing.

While Mom and I attended church, the guys were outside in the garden, spraying and doing a variety of miscellaneous yard maintenance chores. After lunch, the guys went back outside to do more spraying, and then they came inside to watch a golf tournament. Stan helped me put away some of the Christmas decorations that had been sitting on the floor in the storage room.  Stan left shortly after 5:00 P.M. and arrived home around 8:00 P.M.

sansCross2Mom, Dad, and I had drinks out on the patio, and Dad and I cooked hot dogs on the grill. For the first time in longer than I can recall, we watched TV after dinner instead of playing cards.

April 25. I had been working for about 45 minutes when I heard Dad’s wheelchair pass by the office en route to the kitchen. When I reminded him that he had four days a week that he could sleep in, he gave me a look of mock surprise. He liked to complain about having to wake up early for dialysis, but he also woke up early on his off days. I followed him into the kitchen to refill my coffee cup and heated him some water while I was there. A few minutes after finishing his coffee, I heard him return to the bedroom and get back into bed.

Mom woke up at 6:30 A.M. and stopped by the office to say good morning and tell me that Dad was still sleeping. He eventually woke up again around 7:00 A.M., which was when I went to the kitchen for breakfast.

sansCross1I was glad that we didn’t have any planned meetings today with home-care health providers. Shortly after 9:00 A.M., Russell and his assistant arrived and started repairing broken tile. They worked until 3:00 P.M., which was when I also quit working for the day so that I could accompany Mom and Dad to the doctor’s office.

Dad’s PCP worked Tuesday through Friday, and not always from the Temple office, and it was difficult to see her within a reasonable amount of time. When I had asked our friend Sue if she could recommend another PCP for Dad, she had recommended Dr. Michael Martin. Dad met with him today for about 20 minutes. The doctor ordered some x-rays and bloodwork, and then we scheduled a follow-up appointment. On the drive home, we all agreed that we liked this doctor. In light of the decision to switch PCPs, Mom said that she would cancel Dad’s appointment with Sarla Patil on Wednesday, two days from now.

sansCross2On the way home, we stopped by Walgreens to purchase birthday cards for a niece, nephew, and grandniece. Since becoming the last Locke of his generation in October of 2008, Dad had been keeping in touch with the children and grandchildren of his siblings. During his medical ordeal of the past year, Dad had maintained this correspondence, being unable to sign only one card, which Mom signed on his behalf.

Photo by Marcus Dall Col on Unsplash

 

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.

 

On the road to PEG removal

April 8, 2016. When Dad’s PCP reviewed his CT scan on March 24, in addition to the seven stress fractures, she mentioned that he had an enlarged prostate, and she recommended that Dad see a urologist. About an hour before my parents were to leave home for the appointment with the urologist, Dad vomited some phlegm.  The doctors’ offices at Scott & White ask that you arrive at least 20 minutes before your scheduled appointment. Dad’s vomiting had delayed their departure and they could not arrive during the prescribed window. Our family has an aversion to being late, so Mom called the doctor’s office to ask whether they should reschedule their appointment. The clerk who answered the phone assured Mom that the office builds in a 15-minute late check-in time, and that they should not worry about arriving too late. I wondered if the clerk laughed to herself that a patient was worried about arriving late. I suspect quite a few patients are either late or no-shows.

pegBustCross1Even with their minor setback, my parents arrived on time to the doctor’s office. When they arrived at the clinic, Mom let Dad off at the door of the clinic so that he could check in while she parked. This simple act of letting Dad out in front of the building was a huge accomplishment. It wasn’t that long ago that it took an additional person in the car to help him out and into a wheelchair.

The visit with the doctor was a bust. He didn’t see anything wrong and said that he wasn’t sure why Dad was there. Unlike his back, Dad’s prostate wasn’t causing him any pain, so the visit seemed very anticlimactic.

The home care nurse was scheduled to stop by the house today to check on Dad. My parents not only wanted to arrive on time to their appointments and events, they expected the same of others as well. Unfortunately, the home care providers were not always so punctual. My parents didn’t have a busy social life, but they ensured that they were available to the providers at the appointed time, and would hold lunch, shopping, visits, or other things until the nurse arrived. Today the nurse was an hour late. She stayed long enough to see if Dad had had any falls and to check his vitals, which were good.

pegBustCross2Dad also had an appointment today with Kristen, his swallow therapist. Unlike every other provider, you could set your watch by her, and as usual, she arrived on time. Today’s appointment was her first visit since Dad was readmitted to home care. Mom was glad to see her again, and Kristen worked with Dad for about an hour. Dad promised to work on his exercises over the weekend, and I hoped that he would.

April 9. During dialysis this morning, Dad’s systolic blood pressure dropped below 100, but the nurse told him not to take his midodrine unless the systolic pressure dropped below 90. After dialysis, Mom thought that Dad seemed weaker than usual. I was surprised that he had been advised to hold off on the midodrine. For months, he had been told that his systolic pressure needed to exceed 100. Mom said that Dad didn’t take the pill because they didn’t want to go against the doctor’s orders, which almost seemed like a joke. I asked her if she had been able to keep a straight face when she said that. I would be back in Temple later today and would try to stop by the dialysis center next week to speak with the nurse about Dad’s changing blood pressure guidelines.

Stan left Houston for Temple at 9:00 A.M., and I left a couple of hours later. I used my trips home to get haircuts, change out clothes, and to run errands. I could seldom start my return trip to Temple before noon.

pegBustCross3April is prime time in central Texas for wildflower viewing. During my drive to Temple, I encountered heavy traffic near Chappell Hill, the location of today’s Bluebonnet Festival. The abundance of wildflowers made the otherwise boring drive a lot more enjoyable.

I eventually arrived at my parents’ home a little after 2:30 P.M.

April 10. When Stan was in Temple, Dad usually skipped church. Sometimes he and Stan would play cribbage, and other times Dad had a list of tasks for Stan. Before Dad entered the hospital 11 months ago, he would have handled all but the most difficult tasks himself. Now, Dad often needed Stan’s assistance many smaller tasks, especially with his recent back challenges.

When Mom and I returned home from church, Stan told me that Dad was in a lot of pain. He noticed that Dad sometimes experienced a sharp pain with certain types of moment. After hearing this news, I gave Dad an Extra Strength Tylenol along with his probiotic. Fortunately, the Tylenol seemed to take effect in a short time and eased Dad’s pain when he moved.

pegBustCross1Dad didn’t want to eat lunch, but he sat with us while we ate, and he agreed to drink a bottle of Ensure. Because he didn’t want to eat, I talked a lot about removing the PEG tube. It was imperative that Dad be able to take in enough nutrition by mouth sustain himself. During our discussion of the visits to Dr. Pfanner’s office (the gastroenterologist), it became apparent that Dad misremembered the number of times he had been to the doctor’s office and thought that he had been there one more time after the MBSS. During our discussion, I agreed with Dad that we would have the PEG removed during his next appointment with Dr. Pfanner, even if it meant that we had to sign an AMA. As I agreed to this plan, I hoped against hope that the doctor would want to pull the PEG during the next visit. The last time that I signed an AMA on Dad’s behalf, I was reported to Adult Protective Services. I was reasonably confident that that wouldn’t happen again, but once bitten, twice shy. Signing an AMA during home care also caused the patient to be discharged from home care.

 

 

After lunch, Dad and Stan went outside to finish up some chores that involved electrical wire. When they finished with that manly task, they watched the Masters golf tournament on television.

pegBustCross2Stan left for Houston shortly before 5:00 P.M. My parents and I watched some TV before I got myself in gear and prepared a casserole for dinner. We ate stylishly late and weren’t finished with dinner until after 8:00 P.M. I was becoming a bit concerned about Stan. He had left here over three hours ago and I still hadn’t heard from him. I was just about to call him when I received a text message stating that he had just arrived home safe and sound. With all of his travels back and forth between Houston and Temple, I was always worried that something might happen to my lifeline, and I was relieved when I learned that he was home.

April 11. Dad woke up before 6:00 A.M. and got himself dressed without waking Mom. When I heard him wheel past the office, I stopped working for a few moments to prepare a cup of hot water for him. While he was still having trouble swallowing thin liquids, drinking hot water was preferred over coffee. Since his surgery, he had not liked the taste of coffee and preferred the water, so not being able to drink coffee was not a hardship for him.

When he finished his breakfast, Dad moved into the home office to prepare their taxes, but found that the room was too dark for him to read the instructions. I agreed that it was a bit dark, but because I spent my day looking at a computer screen, I hadn’t been bothered by the dimly-lit room. It bothered him, so after he found some CF light bulbs, I set up the ladder and replaced the burnt out bulbs. The difference was like night and day.

pegBustCross3While I was in my 10:30 A.M. meeting, Dad vomited some applesauce and probably some of his meds. The home care nurse stopped by at 11:30 A.M. I told her that I was concerned about the vomiting, but she said that his vitals were great. Dad complained about some non-specific pain that kept moving around, but because he didn’t have an elevated temperature, it didn’t seem like he had an infection. I was frustrated by and concerned about his little setbacks.

After lunch, I worked until Kristen arrived for Dad’s swallow therapy. She had him swallow water and he did very well. While she was here, Julie from the Speech Pathology department at Scott & White called and said that as far as they were concerned, Dad could have his PEG tube removed. She said that they had recommended that the PEG stay in place until after his surgery so that we could accommodate any problems that might result from post-operative delirium. Because he did well during that time, it was up to the gastroenterologist to determine if Dad could get adequate nourishment by mouth. This news was a relief, and it felt like we had tackled one of our major hurdles.

After I stopped working for the day, I took a short walk and called one of my girlfriends. She said that she didn’t think that her father would survive his colon cancer. Her husband’s mother was struggling with a bout of pneumonia, although she seemed to be doing well. Although it was comforting to talk with someone who understood the source of your stress, this was one of those times when misery didn’t like company.

pegBustCross3My parents and I enjoyed a nice evening together. After our happy hour and dinner, we played Oh Hell. It was a close game, but I beat them by three points. On days like this one, I tried to soak up my parents’ essence so that I could remember every detail about their laughter and their good humor.

 

Thank goodness for the (relative) calm after the surgery

April 2, 2016. After staying up last night until after 11:00 P.M. following Dad’s fistula fiasco, the 4:30 A.M. alarm seemed to come just moments after I placed my head on my pillow. By the time that I had dressed and started the coffee, the light was on in my parent’s room. Dad’s incision site had bled only slightly during the night. After eating breakfast and administering meds, Mom and I took Dad to dialysis. When we arrived, he weighed 153.34 lbs., which was about 3 lbs. more than his dry weight. After getting him settled in for his three-hour session, Mom and I left for home around 7:30 A.M. When we returned to pick him up, his RN, Melissa, showed him how to find the thrill in his arm. Following fistula surgery, when you place your fingers over the fistula, instead of feeling a pulse, you feel a whooshing that feels almost like a cat’s purr. This whooshing vibration is the thrill. His post-dialysis weight was 150.92 lb.

Dad’s fistula would need to cure for a couple of months before he could use it for hemodialysis. Dad’s surgeon, Dr. Jaffers, had told him that he should check his thrill on a daily basis. If he could not feel it, he should contact his doctor, and he’d probably need surgery to repair the fistula.

calmButterflyWhile my husband, Stan, was in town, he mowed the lawn and sprayed weeds. After lunch, Dad took a nap, and Stan and I drove to the Miller Springs Nature Center near Lake Belton to find some accessible trails that Dad might be able to walk. The trails seemed a bit less than optimal and appeared to be a little damaged. I was pretty certain that Dad would have a difficult time navigating them with a cane or a wheelchair.

My lack of sleep was starting to take its toll on me, and when we returned home, I needed a nap. Fortunately, I woke up in time for happy hour. After dinner, dad was feeling well enough to play cards, and I won.

April 3. According to Mom, Dad’s incision seeped a bit more during the night. While Mom and I went to church, Dad and Stan stayed home and played cribbage. As Mom and I were walking into the church, my phone rang. It was the home-care nurse, Paula, and she wanted to come by and admit Dad into Scott & White Home Care. When our friend and nurse practitioner, Sue, heard about Dad’s ordeal with the fistula surgery, she was more than a little exercised, and she could not believe that the incision was still seeping blood. She said that “bleeding wasn’t supposed to happen.” I told her that I have hundreds of pages of documentation full of things that “shouldn’t have happened” to my father.

Because Sue had been so worried about Dad’s continued bleeding, we checked Dad’s dressing as soon as we returned home. Paula arrived at 1:00 P.M., shortly after we had finished replacing the adhesive on the dressing. Paula offered to change his dressing, but we decided to wait until we heard from Dr. Jaffers. Because she was part of the Scott & White network, she was able to email Dr. Jaffers to see how soon we could have the dressing changed.

It was comforting to have my nursing lifeline back.

calmCross1April 4. I logged on to Dad’s MyChart account at Scott & White and saw that Dad’s appointment with Dr. Jaffers had been rescheduled to a later date. At the start of his office hours, I called Patsy, Dr. Jaffers’s secretary, to see why our appointment had changed. Her phone number had been one of the numbers that I had called in response to Dad’s bleeding after the surgery. When she heard that it was me calling, she said that she was getting ready to return my call from Friday evening. I also told her about the drainage of Dad’s dressing and thought that it should be changed. When I told her that I had photographed it with my phone, she asked me to text the photo to her cell. She soon returned my call and told me to take Dad to the dialysis center and have the nurses change his dressing. To ensure that we wouldn’t encounter a problem there, I called the charge nurse to let her know that the doctor had instructed us to drop by. Dad and Mom left a few minutes later and had no problem getting Renee, one of the nurses, to change the dressing. She and some of the others there were a little disturbed about the problems that he had encountered. Unbelievably, it seems that he was the first person ever to have problems of this nature. Of course.

calmCross2This afternoon while I was working, I looked out the window and saw Dad holding the cane with his right hand and dragging a garden hose with the arm that had just had surgery. I immediately ran outside to help him. My major concern was that he might fall, but he also seemed out of breath, and then there was the issue with his arm. I got him to rest for a minute before he headed out to the garden to see my mother, who was planting cucumber seeds. It was pretty warm out, so I wasn’t wild about either them being in the direct sun.

At 4:00 P.M. I ended work so that I could download some bank statements and transaction statements for Dad. We finished at 4:30 P.M., and then I took a short walk to stretch my legs. We had a nice happy hour and watched the news before eating a tender chicken that had been stewing in a crock pot. We played cards after dinner, and my mother won. We hit the hay a little early. I did a little packing and gathering for my trip home on Wednesday, two days from now.

April 5. I was up early and had to wake Mom and Dad with the “good morning” song. They were moving a little slow but they were up and out of the house by 6:15 A.M.  When Mom returned from dropping off Dad at the dialysis center, she said that they planned to remove 3,300 ml of fluid today, but they would also add fluid, so the net amount removed would be closer to 2,000 ml. I’m no nephrologist, but I wasn’t sure why they didn’t just remove 2,000 ml.

calmCross3After lunch, Dad took a nap. He was sleeping soundly, and I had a difficult time waking him. He finally got up at 2:45 P.M., 45 minutes after I started trying to wake him. The rest of the day went well. He and I talked about dinner plans for Saturday, and I went to the store to buy him a battery and some food. After dinner, we played cards, and Mom won.

It was after dinner when the day went to Hell. It seemed to me like Dad was out of breath. Concerned, I checked his oxygen level, and it was fine, but his heart rate was 132. I had been hoping that he would start weaning himself from the wheelchair, but the more we talked, the more apparent it became that he wasn’t getting rid of the wheelchair. According to Dad, the wheelchair was the only comfort that he had. Furthermore, he didn’t trust Dr. Pfanner and thought that he’d keep coming up with excuses for not pulling Dad’s PEG tube. Dad then shared a bucketful of excuses for not walking or getting rid of the wheelchair and not exercising. When our discussion turned into a heated argument, Mom came into the room and asked what we were arguing about.

Dad seemed to be in the midst of a terrible pity party, and he couldn’t seem to see his way out. I was a little concerned because he seemed depressed. I’m no expert, but I knew that he was in pain, which probably contributed to his attitude and outlook on life.

calmCross1I was too tired to continue the fruitless conversation, and I went upstairs to bed. I could hear the television, and it was on for quite a while. Evidently, Dad went to bed late after watching Ted Cruz give his victory speech in Wisconsin. By the time he went to bed, he didn’t like Ted Cruz.

April 6. I dragged myself out of bed at 3:45 A.M. and was logged on to work 15 minutes later. Mom and Dad were up by 6:00 A.M., and I stopped work at 7:30 A.M. so that the three of us could eat Mom’s homemade banana muffins for breakfast.

At 10:00 A.M., I took a brief break from work when Kathleen arrived to administer a physical therapy assessment for Dad. Following her assessment, she said that she would put him on an aggressive rehab plan so that he could walk with or without a cane. Kristen, the speech therapist, also called this morning and scheduled a session time with Dad on Friday afternoon. I would be in Houston on Friday and was disappointed that I wouldn’t get to see her.

I called Dr. Pfanner’s office and tried to get a straight answer from his nurse about whether or not Dad needed to take another MBSS before he could have the PEG tube removed. After not getting a straight answer, I emailed her again and restated my question in writing.

calmCross2I left Temple for my home in Houston at 12:43 P.M. and arrived home shortly after 3:30 P.M. I was pretty tired for the last 40 minutes of the drive and forced myself to stay awake. Stan got home from work about an hour later.

It seemed like I had been gone for quite a while, and it was good to be home again with Stan and our cats. Stan fixed us a nice dinner of turkey breast, and it was moist and yummy. After dinner, we made reservations for our trip to Wisconsin this September. My friends had surprised me with a girlfriend trip to Wisconsin to celebrate a milestone birthday last year, but my father’s situation had required a postponement of our plans, and this trip was our time to get together at last.

April 7. Because I would be working from home today, I was able to sleep in until 4:00 A.M., and lounge around and watch the news until 5:30 A.M. I finally got to my home office above my garage at 6:00 A.M., close to the time that Mom and Dad were on their way to the dialysis center back in Temple.

calmCross3Back in Temple, Dad had 1,800 ml of fluid removed during dialysis and his nurse also removed his dressing. Sue, the dialysis nurse practitioner and our friend, had been very concerned about Dad’s progress and stopped by to ensure that his fistula was healing well.

I worked until 5:00 P.M. and then called Mom for a quick update on their day. After Dad’s nap, they spent quite a bit of time outdoors in their garden, planning a drip line. When I called them, they were watching the news and enjoying happy hour.

After I spoke with Mom, I set up an account with WordPress so that I could begin sharing Dad’s story, a story that I hoped would be ending soon.

 

 

 

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