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.

 

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