December 14, 2015. We had a 9:00 A.M. appointment today with Dr. Pfanner, the gastroenterologist. Before Michell had left on Wednesday, she had mentioned to me that Dad had seemed a bit weaker. His strength had seemed to wax and wane depending on the quality of his sleep. However, yesterday Katherine also mentioned Dad’s weakness and suggested that we ask the doctor to order another CDiff test. Some of Dad’s symptoms were returning, and we suspected that his last course of antibiotics had not completely eradicated the infection.

When we arrived at the doctor’s office, the nurses and doctor were agog about Dad, repeating how much better he looked than he had just a few weeks earlier. The nurse said that seeing him “just made her day.” They were also pleased that he had gained a couple of pounds. His weight was up to 139 pounds. The dietitian said that if he passed his swallow test, she would recommend that we start him on bolus feeds, which would mimic three to four meals per day. I also asked her about putting him on a probiotic diet to reduce the likelihood of contracting CDiff. She thought that that was a good idea and that she would discuss options with Dr. Pfanner. I also asked her if we could have Dad retested for CDiff because for the past couple of days he seemed to be exhibiting some of its symptoms again. Dr. Pfanner told me to order VSL#3 Probiotics for Dad and administer one sachet a day in his feeding tube. He said that he would rather wait a couple of more days to see if Dad’s symptoms persisted before retesting him for CDiff.

The gastroenterologist’s office was located in the clinic at the hospital. While Dad and Katherine waited for the HOP to take them home, I decided to stop by my parents’ cardiologist, whose office was in the hospital. Dr. Elizabeth Ebert was not available, but I was able to speak with Jennifer, her nurse, about removing Metoprolol, a Lopressor, from Dad’s list of meds. To this layperson, this drug seemed at cross-purposes with another one of his medications. Jennifer said that Cardiology would defer to Nephrology about all of his blood pressure prescriptions, so I would need to contact Dr. Issac. After Dad and Katherine returned home, Dad took a nap.

Mom had mistakenly scheduled the physical therapist for 1:30 P.M., which conflicted with Dad’s standing appointment with the speech therapist. Although he had been a little weak during his last session, he had a good physical therapy session today with Brenda. When Kristin, the speech therapist, arrived at 2:00 P.M., she said that she could reschedule Dad’s session for the same time this Friday.

At 4:30 P.M., I changed Dad’s trach tube. It didn’t go as smoothly as most of the other changes, but it wasn’t nearly as horrible the last the time when I got the two trach collars tangled up on the collars’ Velcro. I’m always unnerved when Dad seems like he can’t breathe, and he turns all red, which can happen after 10 seconds. Katherine is a wonderful CMA and had been handling the daily trach care and the meds for me, but she said that she didn’t want any part of the trach changing and she was glad that I was around to do it.

During happy hour, Dad seemed to use the Yankauer suction wand more often than usual and coughed up a lot of secretions. It wasn’t unusual for him to cough more than usual after I changed the trach, and I suspected that the lubricant that I used on the trach tube was the culprit. The addition of ice, which probably hardened the lubricant somewhat, might have contributed to the additional irritation and secretions.

December 15. Dad and Katherine were up at 4:15 A.M. Except for waking up for a few minutes at 11:30 P.M., Dad had had a good night’s sleep. Mom had called the dispatch office yesterday to set up Dad’s pickup schedule for the next two weeks. Because we now understood that we had to schedule time by the target arrival time and not the pickup time, today’s bus arrived at the more reasonable hour of 6:00 A.M., approximately 25 minutes later than before. Katherine mentioned that Dad’s CDiff symptoms were worsening and that the diarrhea seemed to have returned with a vengeance. As much as I liked Dr. Pfanner, I was just a little annoyed that he hadn’t ordered the lab work and wouldn’t do so for another 24 hours.

Today, I drove 65 miles to Austin to attend an annual lunch with a group of former coworkers. It was a long way to go for lunch, but we had been meeting for about 15 years, and I always looked forward to seeing these guys. The luncheon also gave me an opportunity to share more of my holiday biscotti and experience one of my normal activities and traditions.

While I was in Austin, Dad seemed much weaker and stumbled and almost fell when he tried to reach for the urinal. Later, he almost toppled over when he got up from the commode. Katherine was learning that she had to keep a watchful eye on him at all times. Dad admitted to her that he was feeling weak and tired, and by 1:00 P.M., he was ready for a nap.

Dad was waking up from his nap when I arrived home at 2:00 P.M. I worked the rest of the afternoon, stopping at 5:00 P.M. when Dad announced that it was time for happy hour.

While we were eating, Dad was sitting in his wheelchair in his bedroom, but became impatient with us and decided to wait for us in bed. Instead of asking for assistance, he decided that he could make the transfer from the wheelchair to the bed by himself. We didn’t realize what he had done until we went to get him to play cards. Because his tube feed and oxygen were attached to the wheelchair, the oxygen and G-tube lines were pulled taught. Once again, I was relieved that he hadn’t decannulated himself by such a stunt. Katherine thought that he was OK, but I noticed a stain on his shirt. When we lifted the shirt, blood appeared to be seeping from his G-tube stoma.

Instead of playing cards, I called the Homecare nurse and texted Sue. Sue called me immediately. We spoke at length, and she tried to assure me that he was probably fine. While I had her on the phone, I decided to tell her about my conversation with Dr. Ebert’s nurse. Sue said that she wanted to keep Dad on the Metoprolol. In response to my call to the Homecare after-hours number, Leo, the night nurse, stopped by, cleaned around the stoma, checked Dad’s vitals, and left at 9:30 P.M. To avoid any similar incidents in the future, we assured Dad that we wanted him to call us at any time and that assisting him would not be a burden.

It was way past bedtime for all of us, and we prepared Dad for bed as soon as Leo left.

December 16. After our late night with Leo, Dad slept in until almost 7:00 A.M. He had now endured the two additional days of CDiff symptoms, so I called Dr. Pfanner’s office as soon as his office opened. I spoke with Talitha, his nurse, to see if she could order a CDiff test for Dad, but she wanted to check with the doctor. After I tired of waiting for a return call, I emailed Dad’s nephrologist to see if he would order the test. By the time Talitha got around to placing the orders, she saw that the order had already been placed by nephrology.

At 10:45 A.M., Michell returned for her week with us. With all of the folderol last week, her week off was only three days. I’m sure that her time off flew by. After Katherine left, I found a note that she had written:

Mr. & Mrs. Locke & Melody,

I just wanted to say thank you so very much for allowing me the opportunity to meet y’all and care for Mr. Locke.

This week has been a true blessing not only for the work (money) but for getting to be a part of y’all’s lives. It’s been a true pleasure.

Have a wonderful week.
Katherine E. S.

Dad had a full schedule of therapists today. Less than an hour after Michell arrived, Janet arrived for Dad’s occupational therapy session. As soon as she left, Dad wanted to lie down for a nap.

Dad woke from his nap about 30 minutes before the always-prompt Kristen arrived for Dad’s swallow therapy session. She was very encouraging and said that Dad was progressing extremely well.

About 40 minutes after Kristen left, Brenda arrived for Dad’s physical therapy session. She also said that Dad was progressing well and said that she would speak with Kathleen, her manager, about increasing Dad’s goals.

Shortly after happy hour, Timothy from American HomePatient stopped by with 12 more tanks of oxygen and a new tube feed pump. Before he left, he showed me how to use it. This pump wasn’t very different, but it used different-sized bags. We had a huge supply of the bags that fit the other pump, but he could not take them. We had so many boxes of supplies that I decided to stash the extra bags in case we needed them again. After Timothy left with the bleeping Kangaroo pump, we played cards, and Michell won.

When I went upstairs to bed, I called Stan to tell him about the day and say goodnight. He was at the office and would be working all night. He also told me that he was now on call for the next week, which meant that he could not drive up to Temple this weekend. Damn.

December 17. I had been working for about 30 minutes when Dad and Michell got up around 4:00 A.M. Each morning when Mom got up, she stepped out the front door to get the newspaper. My parents had the most wonderful paper carrier on earth. Each morning he would pull into their circle driveway, get out of his car, and place the newspaper on the front porch. On most mornings, my parents could simply lean down and pick up the paper without stepping out of the door onto the front porch.

Today, however, was different. Although the paper was in the right place, Mom saw something on the front porch that kept her from opening the door. When Mom looked out of the front windows, she saw a large snake on the front porch, which wasn’t all that unusual. It scared her enough, though, that she wouldn’t open the door to get the paper, and she came to the office to get me—the biggest wuss in the world when it comes to snakes. When I looked out the front window, I had to laugh. The snake turned out to be a bungee cord that fell off of Timothy’s hand truck during his delivery last night. With the bravado of Crocodile Dundee’s better half, I boldly walked outside, captured the bungee snake, and picked up the newspaper.

Before they left for dialysis, I shared the story of the bungee snake with Dad and Michell, and we all got a good laugh out of the tale, including Mom.

The bus arrived back home with Dad and Michell at 11:25 A.M. After administering Dad’s meds and getting him settled for a nap, Michell and I collected another stool specimen that I dropped off at the Scott & White lab.

With all of the interruptions of the day, I didn’t get back to work until 4:00 P.M. I was exhausted and ate some M&Ms in an attempt to stay alert for the short time that I worked. We lived on a schedule here, so I stopped working at 5:00 P.M. We had happy hour before dinner at 6:00 P.M.

Because we had had a big lunch of meatloaf sandwiches, we weren’t terribly hungry at dinnertime, so we had minestrone. After dinner, the four of us played cards, and Mom won.

It felt so easy and comfortable now that Michell was back with us. I made a point of telling her how glad I was that she was back. I should do that more often. It had been a busy day of snake wrangling, test samples, errands, and even some work. I was in bed by 8:15 P.M and glad to be there.