October 20, 2015. Dad slept well, waking only once during the night. At 4:30 A.M., I took a brief break from work to administer his Midodrine and his morning trach care. Gale and Dad were ready several minutes before the Scott & White ambulance arrived, and Dad was hooked up to the dialysis machine by 7:00 A.M.

Although Tuesday was the scheduled day for the aides to change, Gale had spoken with Becky, the owner of One on One Personal Care, and requested that they switch out on Wednesday to better accommodate Dad’s dialysis schedule, which could not change. Becky agreed and later sent me email, notifying me of Gale’s replacement tomorrow. According to Becky, “Michell is 47 years old and has 26 years of caregiving experience.” She continued by stating that Michell had fantastic references and came highly recommended. What Becky didn’t tell me was that she had just hired Michell yesterday.

When Dad and Gale returned from dialysis, she took him to his room and hooked him up to the humidified air and tube feed, and I administered his midday meds. Dad was tired from dialysis and drifted off to sleep.

Shortly after lunch, a UPS driver rang our doorbell. He had come to pick up the “box” that contained the infant-sized trach care kits. When I pointed to the five-foot stack of six boxes, he said that his pickup request specified only one box. I apologized for the mix-up,  sent him away empty-handed, and called American HomePatient. I had noted the woman’s name who had assisted me yesterday and was able to speak with her again. Evidently, our order had specified one case of FR-14 trach care kits, but the order pickers sent us six cases of FR-8 trach care kits. This discrepancy proved problematic for their inventory system and she said that she’d have to get back to me later.

After dinner this evening, we played cards, and Mom won again. The game ended at 8:30 P.M., at which time we started our nighttime regimen. Dad had slept well last night. I hoped that we could log two good nights in a row.

October 21. Dad, Gale, and I had a great night’s sleep. Although they both slept longer than me, I didn’t begrudge them their longer sleep. It was nice for me to score six hours of sleep. By 7:00 A.M., Dad had received his morning meds and trach care, and he was dressed and in the kitchen talking with Mom. Gale used their time in the kitchen to prepare to return home for the next seven days.

While I was attending an online meeting at work, Michell, the new aide, arrived. Gale spent the next hour orienting her to the routine and her responsibilities. Before Gale left, she confided in me that she thought that she smelled cigarette smoke on Michell’s hands. To address her suspicions, Gale stressed to Michell that we had oxygen in the house and that smoke particles were a hazard for Dad because of his trach.

Gale filled a room with her presence and when she was gone, the house felt empty. Michell seemed a little slow getting started, but everyone paled in comparison to Gale.

At 12:30 P.M., I took a long lunch break and went to the dialysis center. Today was Dad’s first “plan of care” meeting between Dad’s dialysis team and me, his advocate. Dad would have his next meeting six months from now and then annually thereafter. During the meeting, I met Dad’s nephrology team: Susan (dietitian), Sue (dialysis nurse practitioner), Dad’s social worker, a couple of other providers, and Dr. Tony Issac (nephrologist), whom I knew from Dad’s stay at Scott & White Memorial. Sue and Susan were also members of my parents’ church, so I already knew three of the people on the team.

Dr. Issac started the meeting by asking if we needed anything. Without any hesitation, I told him that I needed him to be Dad’s PCP. Dad was running out of several medications that required the authorization of a physician. I said Dad also needed referrals to see specialists. I told him that although I was an MBRT, I would really like Dad to see a pulmonologist. The room became quiet, people looked at one other for a moment, and the doctor gave me a questioning look. I responded by saying, “make-believe respiratory therapist.” He laughed. In addition to explaining the need for a pulmonologist, I told them about our difficulty in getting a referral to a wound care specialist and how I had had to order the Y extensions from Amazon.com.

Prior to this meeting, I had heard that Dad could not get his dialysis catheter wet. I asked about bathing, and they were practically militant in their response about the importance of keeping the port dry. Basically, this invasive device was like a highway to his heart and brain. Dampness could introduce infection, and we all agreed that we wanted to do everything possible to avoid introducing an infection into his heart. I explained that while Dad was hospitalized, I had become accustomed to seeing the results of his lab work. Even in the last week, his lab results fluctuated wildly. He had been away from the hospital for three weeks and I was nervous about how well he was doing. The only lab results that I had seen were specific to the kidneys. The doctor said that he could order additional lab work and monitor the results.

Finally, I mentioned Dad’s weight, which was now less than 135 pounds. When he was admitted to the hospital five months earlier, Dad weighed 161 pounds. I felt better now that we now had an IV pole on his wheelchair, which enabled him to continuously receive nutrition, but I thought that he needed more calories. Susan told me that I could increase the flow rate from 50 to 55 ml/hour. If he tolerated that, we could increase the flow by an additional 5 ml/hour. She thought that Dad should consult a gastroenterologist to see if the doctor would recommend a bolus feed.

Susan also said that Dad’s calcium levels were high, caused by his extended time in bed. She added that movement would help to decrease the calcium levels. It’s ironic that when you’re sedentary, calcium leaches from your bones and into your blood, which causes the high calcium levels in your blood and decreases your bone density. Although his bones could use extra calcium, I couldn’t give him any because of the calcium in his blood.

We also discussed different ways to weigh him. Unless they can weigh Dad, they cannot calculate a dry weight for him, which means that they’re guessing about how much fluid to remove. The scale at the dialysis center can accommodate a wheelchair, but nothing larger. Because Dad arrived on a gurney, they could not weigh him. They discussed different options, including a Hoyer sling. The dialysis center owns a Hoyer lift, but patients need to provide their own slings. Unfortunately, Medicare could not understand the use case of needing the inexpensive sling without the expensive lift. Someone joked that maybe we could buy a sling on Amazon.com. Dr. Issac pulled out his phone and learned that you could indeed. Nevertheless, we decided to wait until we could transport Dad in a wheelchair and weigh him at that time.

The doctor was very accommodating, and the general feeling in the room was one of awe. They could not believe that we had had so little support, and for all intents and purposes had been on our own. I left the meeting with an overwhelming sense of relief that we now had an additional support system. In addition to being able to call the various dialysis providers, I could also communicate with them via MyChart, the patient portal for Scott & White.

When I returned home, Michell watched while I administered Dad’s trach care and midday meds. Shortly after I returned to work, Brenda stopped by for Dad’s physical therapy session. I could not attend the session, but Michell said that she saw Dad stand up on his own by holding on to the bathroom sink. She watched the entire session and thought that he did pretty well. After Brenda left, Dad napped until I logged off from work.

The weather was still nice and the four of us enjoyed happy hour on the patio. After dinner, Michell passed our litmus test and joined us for a game of Oh Hell. Dad had now had two good nights in a row. After running through the nighttime routine with Michell, I hoped that Michell’s first night with Dad would be uneventful.

October 22. Like an answer to a prayer, Dad had another quiet night. Today was Michell’s first day of dialysis with Dad. I don’t know what went wrong, but Dad seemed to jump his groove during his morning routine, although he was still ready when the EMTs arrived at 6:15 A.M.  Although Michell had several years of experience working in nursing facilities, she had never been in a dialysis center, so this was a new experience for her. She managed just fine and was able to administer Dad’s Midodrine two hours into his session. She also had pretty good luck with the ambulance, and she and Dad were home from dialysis by noon.

As usual, Dad was pretty wiped out from dialysis and took a nap shortly after I administered his midday meds and trach care. Dad slept until almost 4:00 P.M. and was ready for happy hour when I logged off from work at 5:00 P.M.

I think that our family happy hour was a new experience for Michell. She didn’t drink, but she still joined us and we found that this time was perfect for getting better acquainted with the aides. Although Dad could not drink with us, he still ensured that we kept the bar refrigerator stocked with the beverages that the aides like to drink.

At the end of Michell’s second day with us, I wondered if Dad would have another good night, or if he’d initiate her with a night of coughing and attempted bed escapes. For the sake of all of us, I hoped that the quiet nights would continue.