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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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