October 14, 2015. Dad’s trach was pretty clogged up with thick secretions this morning and I had to break down the secretions with saline to clear his trach. When I was finished suctioning him, Gale and I got him into the wheelchair and he wheeled himself into the bathroom, where he proceeded to cough up quite a bit of mucus into the sink.

At 9:15 A.M., the nurse arrived with a young woman in tow, whom she introduced as a nursing student. Before proceeding with Dad’s exam, she asked if we minded having another person in the room. We had become accustomed to nursing students during Dad’s stay at the CCH, so we told her that we didn’t mind. His vitals were good, including his oxygen saturation, but his poor bedsores hadn’t improved during the past week.

After lunch, Dad had Mom and Gale take him outside to check on the hoses in the backyard. My parents’ acre lot had quite a few young trees. Dad had set up permanent irrigation to some of the trees, but his system required that some hoses be moved among the trees. Diane had been his ready assistant a few days ago, and now it was Gale’s turn. Fortunately, Gale loved being outdoors.

Later, Dad announced that he wanted to go to the garage to see if he could get into the car. I told him that this was a difficult transfer and that he wasn’t ready for it. His problem, or maybe it was my problem, was that everyone kept telling him how good he looked and how well he was doing, and he took their comments just a bit too much to heart. We both stood our ground and argued about it for a few minutes. I finally told him that we would speak with the physical therapist when she arrived later today to see what she said, and he grudgingly relented.

In addition to being concerned about all of the time that Dad was off of the humidified air, I was also concerned about the considerable amount of time he spent disconnected from his tube feed. The tube feed was available to him only in his room because his wheelchair had no IV pole to which to attach the Kangaroo pump that operated the feed. I suspected that he was receiving less than half of the protein and other nutrients that he needed. If I could attach the Kangaroo pump to the wheelchair, then he could receive nutrition all the time as he moved around the house, property, and elsewhere, except during dialysis. When I had called American HomePatient earlier this morning to see if I could get an IV pole for the wheelchair, the person who took my call said that she would have someone get back to me. Timothy from American HomePatient called this afternoon to see if we would be at home to receive our order of oxygen tanks and the IV pole. When he delivered our order, he also connected the IV pole to the chair.

Brenda, the physical therapist aide, arrived at 11:15 A.M. When we asked her if she thought that Dad could negotiate a wheelchair-to-car transfer, she said that she would have to speak with Kathleen, the physical therapist, to see if we could make that transfer one of his goals. In the meantime, he should not attempt it. She added that until Dad was proficient at this type of transfer, he could have a real problem if he could make the transfer at home when he was rested, but then not be able to handle the transfer when he wanted to come home. He wasn’t thrilled with her response, but he agreed to see what Kathleen had to say. He later claimed that the therapists were trying to hold him back. I explained that they had a plan for his recovery and that he had to be a bit more patient. Dad and I weren’t famous for our patience, so this was a big request.

During the past few days, I had been discovering some of the flaws in the homecare system and Medicare. When the nurse encouraged us to take Dad to a wound care specialist, I called the nurse practitioner at the CCH for the referral and was told that Dad was no longer their patient and that we would have to get all of our referrals from his primary care physician (PCP). Dad had been hospitalized since May and hadn’t seen his PCP in almost two years. As a matter of fact, we had to cancel an appointment with her during his hospitalization. When I called the office of Dr. Sarla Patil, his PCP, and explained our predicament to her nurse, she said that the doctor could not provide any referrals or refill his prescriptions unless he came to her office. She went on to say that had Dr. Patil been the referring physician for homecare, then they could help, which was a nonhelpful and ridiculous comment. When I explained that he wasn’t ambulatory, she apologized and said that there was nothing that she could do. In desperation, I called the office of the doctor who had saved his life, Dr. Randall Smith. I spoke with his nurse, Christine, and explained Dad’s relationship to the doctor and that we needed to see a wound care specialist. A couple of hours later, a clerk at the wound care center called to schedule an appointment for Dad at 2:30 P.M. on October 27, almost two weeks from now. Dr. Smith wasn’t Dad’s physician—just a compassionate health provider. Thank goodness for Dr. Smith.

I finished work around 5:00 P.M. and thought that I should suction Dad before our happy hour. Once again, I had to use saline to loosen the thickened secretions at the bottom of his trach. As much as I hated to do this at night when I was tired, I decided that I should change his trach after dinner.

October is a delightful month in central Texas, and we decided to enjoy the wonderful weather by taking happy hour to the patio. We shared some family stories with Gale and she told us stories about her family and grandchildren.

After dinner, Dad was ready to play cards, but I wanted to change his trach before I became too tired. After I set up my two TV trays and trach-changing kit, Gale and Dad returned to the bedroom, and I changed out the trach. Very much like the last time, the interior of this trach tube was lined with hardened secretions and I had to leave it soaking in saline while we played cards. The more time that he was away from the humidified air, the more likely it was that he would narrow his airway with hardened secretions. I showed him the buildup in the trach, but I don’t think that he connected the cause and effect. I don’t know if it was because of the extra air that he received from his new trach, but Dad won at Oh Hell again tonight.

When the game was over, I finished cleaning up the trach while Gale helped Dad get ready for bed. Because I had just changed the trach, I skipped the nightly trach care and just administered his meds while Gale got ready for bed.

I was finally able to call Stan shortly before 9:15 P.M. to give him an update on the day. He then told me that he had decided to stay home this coming weekend and take his on-call rotation for this week, which required that he stay close to home. I was very disappointed, but he assured me that if he took on this responsibility now, he wouldn’t have to miss any more weekends with us for the remainder of the year.

October 15. At 1:30 A.M., I was awakened by the sound of coughing coming through the baby monitor. I kept hoping that Dad would use the Yankauer wand, but at 2:00 A.M., I went downstairs to suction him. When I was finished, he was ready to get up and start preparing for dialysis. I told him that I needed to get some more sleep before I started work. Even when he was in his most delirious state, I could reason with him when I played the work card. He didn’t want to do anything that would jeopardize my career or my ability to work. He agreed to stay in bed and I went back upstairs and collapsed on the bed. My iPhone alarm woke me at 3:30 A.M., but I couldn’t get myself out of the bed for another 15 minutes. I donned my scrubs (I now had four sets.) and went back downstairs to work until I had to wake up the residents of the master bedroom. At 4:15 A.M., I woke Dad and Gale and grabbed another cup of coffee for myself.

Dad seemed to lack the energy that he had possessed a couple of hours earlier and was moving a little slow. Even with his lower energy level, he required only a little assistance from Gale to transfer from the bed to the wheelchair, although he still was not strong enough to stand and walk. After Dad was dressed for dialysis, I suctioned him and administered his Midodrine, which was the only drug that he took before dialysis. Midodrine elevated his blood pressure, and the aide always took a diluted dosage that she administered in his G-tube after two hours of dialysis. If his blood pressure dropped too much during dialysis, he might need to go to the emergency room, a trip that we wanted to avoid at all costs.

At 5:45 A.M., Dad and Gale were ready to go, and the ambulance from Scott & White arrived on time 25 minutes later. A couple of hours after Dad’s dialysis session started, I received a call on my mobile phone. My heart stopped when I saw that the caller was Gale. I was relieved when she said that the nurses were administering flu shots today and she wanted to check with me before he received one. I told her that he should get the flu shot, and then I sat for a couple of moments while I waited for my heart rate to return to normal. Although Dad had been doing well while he was at home, he was still very ill and faced numerous challenges. I felt like I was holding my breath whenever he wasn’t within my sight, and these phone calls from the dialysis center were almost as bad as the nighttime calls had been when Dad was in the hospital.

Dad’s dialysis session went well and he and Gale were back home by noon. I stopped work to take the wheelchair outside for Dad’s transfer from the gurney, but after we came indoors, Gale took over and got Dad on the bed and hooked up to his humidified air and tube feed. When Dad drifted off to sleep, Gale, Mom, and I took a short lunch break. When Gale saw that Dad was still sleeping, she seized the opportunity to rest on her bed for what she called a long minute. By 2:00 P.M., Dad was awake and ready to go outside. Gale removed the Kangaroo pump from the IV pole in the bedroom and attached it to the IV pole that was now installed on the wheelchair. Although we still had to rely on the trach bib moistened with sterile water to provide some moisture to his lungs, he no longer was deprived of tube feed when he left the bedroom. Dad had to be more careful as he navigated the hallways to ensure that the pump didn’t hit the wall or knock photographs off of the wall.

Shortly before dinner at 6:30 P.M., I suctioned Dad again and let him get a bit more rest until it was time to play a cutthroat game of Oh Hell. After he won again tonight, the second night in a row, we were suspecting that these naps were giving him an unfair advantage over the weary.

October 16. At 2:00 A.M., I could hear some talking through the baby monitor, but I couldn’t make out what they were saying. When I got out of bed and moved down the stairs, I could hear that Gale was assisting Dad to the bedside commode in the bathroom. They didn’t need me, so I retreated to my bedroom. When I got up at 3:30 A.M. to work, both Gale and Dad were sleeping soundly. At 4:30 A.M., I was walking with a cup of coffee from the kitchen and I heard Dad coughing. I woke the two sleeping beauties and suctioned Dad. They were back to sleep before I sat down in front of my computer with another cup of coffee.

By 7:45 A.M., Dad was in his wheelchair in front of the bathroom sink. All Gale had to do was open the doors under the sink and place the towel so that he didn’t injure his shins. She was now able to straighten up the room and make the bed while he shaved and brushed his teeth. I took a break from work around 9:00 A.M. to administer trach care and morning meds. As usual, he was all dressed and looking spiffy.

When I was finished with him, he rolled himself into the kitchen and said, “Mary, could you fix me a soft-boiled egg?” Mom and I didn’t say anything for a moment, and it was all that I could do to hold myself together. When I explained to him that he couldn’t eat anything, he couldn’t believe that he couldn’t have just an egg. I explained that at some point he would receive swallow therapy, and then hoped to God that he would.

About an hour later, the nurse arrived to check his vitals and see how his bedsore was healing. She thought that it was healing nicely. Doesn’t that just figure? As soon as you get an appointment with a specialist, you start getting better. Shortly after the nurse left, Janet, the occupational therapist, arrived. I had always thought that occupational therapists worked with patients to help them learn how to take care of themselves. Janet spent most of her time working on Dad’s core muscles. Like Kathleen, the physical therapist, Janet was also a New Yorker, and she and Dad could banter like nobody’s business. I don’t know who enjoyed it more, Janet or my father. I could hear them from my parents’ office, and sometimes I had to just shake my head and laugh.

After Janet left, Dad was a little tired and needed a rest. He retired to his room for a nap at 12:30 P.M. and slept for a little over an hour. At 5:00 P.M., our good friends from across the street stopped by for happy hour. Once again, the weather was wonderful, so we all sat out on the patio. This hour with Jim and Sharon was the closest to normal that I had felt in a long time.

When the neighbors left, Dad rested while Mom, Gale, and I ate dinner. After dinner was cleared and the kitchen was cleaned, Dad came back and beat us again at cards. The three losers were seriously considering putting a stop to his evening naps if he kept whupping us at cards. Shortly after 8:30 P.M., Dad, Gale, and I started our nightly ritual and Mom prepared the coffee for the following morning—probably the most important nightly task.

It had been a long day, and by the time that Dad and Gale were in bed and I called Stan, I felt as if I had been awake forever. Although tomorrow was Saturday, it was dialysis day, which meant an early start for our household. I hoped that Dad would sleep until 4:30 A.M.