November 2, 2015. I had been working for over an hour when Dad woke up at 5:00 A.M. after a restless night. He was ready to get out of bed, so Gale got up, disconnected his oxygen and tube feed, and helped him transfer from the bed to the wheelchair. Just four weeks earlier, this transfer required the brawn of both Gale and me. Now, Dad needed just a minor assist from one of us. Because he was now able to reposition himself in the bed, we no longer had to use the draw sheet to move him in the bed.
By 6:00 A.M. he was dressed and ready for his morning meds and trach care. His burst of energy was short-lived, however. By 7:30 A.M. he was ready for a nap, but 90 minutes later he was awake and ready to face the day again.
Later in the morning, I received a call from Barbara at the Scott & White gastroenterology center. She said that her office had received a referral from Dr. Issac. She wanted to schedule an appointment for Dad to have his G-tube changed and to discuss bulous feeds, which would enable us to administer larger quantities of Nepro three to four times each day and discontinue the continuous feed. Because of Dad’s dialysis schedule, I couldn’t schedule an appointment any earlier than November 30.
A short time later, I received a text message from Sue, our friend and the nurse practitioner at the dialysis center. After conferring with Dr. Issac about the missing Fluconazole (antifungal), she said that the doctor wanted Dad to take the pills for another two weeks. She wrote a new prescription for two weeks’ worth of pills, which still cost the better part of $200, but about half the cost of the prescription that we had declined on Saturday at the pharmacy.
The nurse arrived shortly before 1:00 P.M. to take Dad’s vitals and check his progress. She thought that he was progressing well, and was gone within 10 minutes.
While I was working, Mom took a phone call from Scott & White EMS. They asked if we still needed the EMS transport service to dialysis. Evidently, we’re supposed to call them at the start of each month to schedule pickups for the upcoming month. I hoped that the next call that we made to the dispatch office was to cancel the service. At $120 per week, this service was starting to get a bit pricey.
Shortly before I was ready to log off for the day, Dad wanted to make his way into the office, which was no easy task. Although the door was wide enough for the wheelchair, the placement of a large desk just inside the door made wheelchair access impossible. Gale and I had to carefully transfer him from the stable wheelchair to the less stable 1980s era four-star desk chair. I was glad that the physical therapist wasn’t here to watch.
A couple of days earlier, Dad had lifted his legs off of the bed during a wheelchair transfer and Laura had been having him exercise in front of the bathroom vanity. Dad said that he wanted to try walking with the walker. After happy hour, Mom followed Dad with the wheelchair and Gale retrieved Dad’s walker and helped him walk 14 steps down the hallway, which was a huge accomplishment. I’m not sure that we should have been having Dad walk without the supervision of his physical therapist, but we were very excited. Only two weeks earlier, standing and moving with the walker would have been impossible.
After dinner, we were ready for a cutthroat game of Oh Hell! By 8:15 P.M., Mom was the big winner, and it was time for us to begin our nighttime routine.
My nighttime calls to Stan were much more enjoyable after a day like today. We were starting to get more support from healthcare providers and Dad’s strength was starting to return. Our baby steps seemed to be moving in the right direction.
November 3. Yesterday’s good day continued on into the night. Dad slept well and didn’t wake up until I woke him at 4:00 A.M. He and Gale marched through their morning routine and were picked up by the EMS at 6:00 A.M. Dad’s scheduled pickup time was 6:20 A.M., but you never knew when they would arrive. Dad didn’t like to be late for anything, so he was usually ready by 5:45 A.M.
I had assumed that Michell would replace Gale tomorrow, but I hadn’t heard anything from Becky, the owner of One on One Personal Home Care. I dashed off a quick email to her to confirm, and then returned to my day job.
Because Dad had been picked up a bit early this morning, he had gotten started early on his dialysis session, and he was able to leave dialysis early. He and Gale didn’t need to wait very long for the EMS ride for the return trip, and they were home by noon. After I administered his meds and trach care, Dad was ready for a little nap.
About a week earlier, on October 26, Barbara, a neighbor and doctor with Scott & White, told us that she would try to help get Dad an earlier appointment with a pulmonologist so that he could get started on his swallow therapy. Today, I asked Mom if she had heard from Barbara. She said that she had, and Barbara had said that after the pulmonologist had checked Dad’s medical records, he declined to see Dad, saying that Dad was a chronic aspirator and that treating him would be pointless. This discouraging news was practically impossible to process. I couldn’t bear the prospect of Dad never being able to eat again. Mom and I tacitly agreed to not share this depressing news with Dad.
When he woke up about three hours later, Gale interrupted me at work to tell me that Dad seemed very disoriented. He was in the bathroom washing his hands, but he didn’t seem to know where he was. We assumed that he was exhausted from dialysis and that he would snap out of it. He didn’t come out of his room to visit with us during happy hour, but he seemed to perk up when asked if he wanted to play cards after dinner.
Dad was still very tired and was ready for bed shortly after Mom was declared the Oh Hell winner of the night. By 7:30 P.M., he was in bed and ready for me to administer his meds and trach care. I sat with him while Gale prepared herself for bed, and then went upstairs to call Stan. To say the least, my updates to him about the daily events were varied from day to day. Because Dad went to bed early, I was also able to retire early and hoped to get an extra 30 minutes of sleep.
November 4. I had been working for about 30 minutes when Dad woke up shortly after 4:15 A.M. He wanted to get out of bed, and he had Gale disconnect him and help him transfer to his wheelchair. He wheeled himself into the bathroom and proceeded to fall asleep. Gale helped him back into the bed and I suctioned him. He had been coughing a lot and had a super wet cough, so I thought that he’d have a lot of secretions to suction, but the trach tube was dry. I surmised that the cough had more to do with his lungs than his trach. After sleeping for about three more hours, he was awake and raring to get out of bed at 7:00 A.M. I took a break from work about an hour later and administered his morning meds. By 8:30 A.M., he was dressed and alert and leaving the bedroom at full speed in his wheelchair.
Around 9:45 A.M., the three of us got with him to walk again: one of us on each side and one behind him with the wheelchair. His gait was a bit unsteady, but he took about 17 steps, which was equivalent to almost 19 feet, a distance that we based on the size of our floor tiles.
Michell arrived at 11:00 A.M. and conferred with Gale for a few minutes. It was nice to have a few weeks in a row with the same two aides. The transitions were easier for them and they were getting to know one another. Shortly after Gale left, Dad wanted to lie down for a short nap.
When Dad woke up, he wanted to work on his computer. I had commandeered his computer desk and had disconnected his computer so that I could use the keyboard and mouse, so he had to use Mom’s computer. With him and Mom in the office, it seemed like the perfect time for me to get out of the room and take a lunch break.
Shortly after 1:00 P.M., Laura arrived for Dad’s physical therapy session. She had Dad walk the same path that we had had him walk earlier, but he walked it at least twice during their session. She then moved him into the bathroom and had him do some exercises while holding onto the vanity. Dad was pretty exhausted when Laura left and was ready for another nap.
Just as I was logging off for the day, I received a text message from Adan, the manager of rehab services at S&W Homecare. I had texted him earlier in the day and asked if we could talk sometime today after 3:00 P.M. When I called him, he said that he would contact our PCP (probably Tony Issac or Sue, Dr. Issac’s nurse practitioner) to have a swallow study ordered for Dad. He also said that he’d have Kristin, a speech pathologist, contact me sometime tomorrow to schedule an appointment with Dad. Adan and I agreed that we wanted her to have some swallow therapy sessions with Dad before the modified barium swallow study (MBSS) to ensure that he would be able to handle the barium. He also said that he would contact the Pulmonary desk at S&W to see if he could find out which doctor would be assigned to Dad.
I was stoked. Adan was one of a handful of people who was in our corner. Without him and the nephrology team at the dialysis center, I don’t know what we would have done. I was thankful that Mom had met and had come to know Adan while Dad was at the CCH. I couldn’t wait to share this good news with Mom and Dad.
We played Oh Hell again, and Dad won (beating Mom by just a few points). We were in bed early and I called Stan at 8:30 P.M. to share the news of the day. It was a nice quiet night until about 12:30 A.M. After hearing Dad cough for about 15 minutes, I got out of bed and went downstairs to suction his trach.
November 5. Sometimes I found it difficult to sleep with all of the noise that emanated from the baby monitor. This was one of those nights—or mornings. I finally got back to sleep about an hour before my iPhone played its annoying wake-up ring tone. I made my way back downstairs, started the coffee maker, and logged on to work.
Dad and Michell were sound asleep when I woke them shortly after 4:00 A.M. We had an uneventful morning and Dad was picked up for dialysis shortly before 6:00 A.M. His dialysis session was finished before 11:00 A.M., and they were home before noon. After administering his midday meds and trach care, he was ready for a nap.
He woke up from his nap a bit disoriented again, but he became more alert as the day progressed. I knew that he was completely alert when he complained after learning how much we were spending on his in-home care. It wasn’t a topic that I wanted to have discussed too much within earshot of Michell. A cost of $1,000 per week might have seemed high, but it was a bargain for 24/7 care.
Other than the discussion about medical bills, Dad was in fairly good spirits for the remainder of the day. We were experiencing another beautiful autumn day today, and Dad wanted us all to sit on the patio during happy hour. Michell was starting her second week with us and was beginning to feel more comfortable with us, and she started talking about her personal life. I have friends who spell their names as Michelle and Michele. I asked her about the spelling of her name and whether hers was a family name. She laughed and said that her mother didn’t know how to Michelle and consequently, her name looked like “mic-hell.”
After dinner, Dad felt well enough to play a couple of games of Oh Hell: Dad won the first game and Mom won the second. We had two sets of criteria that determined how long we played cards: how Dad felt and whether he had dialysis the next day and how I felt and whether I had to work the next day. For the most part, I wanted to start Dad’s nighttime routine by 8:30 P.M. so that I could go to sleep by 9:30 P.M. A perfect night was one in which we all got six hours of uninterrupted sleep.
A perfect night was one in which we all got six hours of uninterrupted sleep.
Today started out pretty well for Dad—in fact, it seemed practically transformative. He was able to pull himself up in the bed with one hand, and his transfers from the bed to the wheelchair were much better. When Tracy, the nurse, stopped by at 10:00 A.M., she said that he was doing well and that his bed sore seemed to be healing. Janet, the occupational therapist, arrived about 90 minutes later and put him through the paces with some arm and core exercises. On her way out, she said that she thought that Dad was progressing very well.
Last Sunday I had purchased a couple of pumpkins from the church. Tomorrow was Halloween, which was Gale’s favorite holiday. She usually spent the day with her granddaughters and was a little disappointed that she was missing this time with them. I had searched the internet for her to find some 
The storm passed through the area pretty fast, and it wasn’t raining at 6:15 A.M. when Dad and Gale were picked up for dialysis by the EMTs. Because it was Saturday, Mom and I ate breakfast together and tried to catch up on some chores around the house. While our lives were revolving around Dad, our household was like a computer. Mom acted as the operating system that managed our primary functions, like shopping, laundry, cleaning, and meal preparation. I kept up with Dad’s appointments, meds, supplies, and trach care. The aides handled Dad’s most basic needs and monitored his safety, and Stan helped with the yard and filled in all of the gaps. He also provided the extra dose of testosterone in the house, which Dad needed.
Mom and I searched the house for the pills, but we couldn’t find them anywhere. We surmised that we must have inadvertently thrown out that prescription when we threw away the bag from the pharmacy. This was our first major system failure since Dad had come home. Mom and I opted to forget about the antifungal—for now. It was less than 45 days ago that we were told that Dad would die from a fungus in his blood. I didn’t like the idea of forgoing this medication. Tomorrow was Sunday and I would see Sue, the dialysis nurse practitioner, at church. I hoped that she might have some suggestions on what we should do. Meanwhile, we felt as if the tricking had started already, and not the treating.
After our happy hour and a spaghetti dinner, I decided that we wanted a group Halloween photo, and I herded everyone outside to the front porch.
I needed to get back to Houston periodically for a day or two. I had contacted a couple of services to see if we could hire nurses to handle Dad’s trach care, but we needed someone three times a day, and I couldn’t figure out how to make it work logistically or financially. I also learned that it wasn’t every nurse that was trained to handle the duties of a respiratory therapist. I had approached Gale a couple of days earlier to see if she would be willing to administer the meds and trach care for Dad while I was gone. I planned to have everything set up and documented for her. Administering the medication was pretty simple with our pill organizer and pill crusher. The trach care was a trickier issue. I was pleased when she said that she would try administering the trach care a couple of times to see if she could handle it.
Shortly after lunch, a UPS driver rang our doorbell. He had come to pick up the “box” that contained the infant-sized 
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.
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.
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.
The nurses were ready for Dad when he arrived, so his dialysis session started at 6:30 A.M. Two hours later, his 
When he woke a couple of hours later, he was in a much better mood. Because Dad could not take anything by mouth, all of his meds were crushed, mixed with water, drawn into a large syringe, and inserted into his G-tube, directly into his stomach. When I reached for the Y extension line that connected the G-tube with the tube feed line and provided the input valves to the G-tube, a loose end came up in my hand. I didn’t know how long that it had been disconnected from the G-tube, but Dad and the bed were a sticky mess. It was as if we had thrown a couple of milkshakes in bed with him.
Shortly after Dad’s return home from the CCH a few weeks earlier, Gale and I were careful about the way in which we handled the Y extension because we didn’t know how long the tubing or connectors would last. Just a few days ago, we had asked the nurse if she could acquire more of them for us. Fortunately, she was able to find one and it was still in its packaging. I planned to bring it with me to the hospital later today and was determined that we would not come home until it was securely inserted in Dad’s G-tube.
As I explained the problem, Dr. Klovenski enlisted the assistance of a medical student. This case was a little out of the ordinary and presented them with a problem-solving exercise that they never experienced in medical school. After gathering a variety of 
In addition to the lightheartedness of the visit, this trip to the hospital felt different for me too. From the moment that I arrived, everyone seemed to listen to what I had to say. I felt as if my IQ had suddenly increased. While Dad and I were waiting for the ambulance to take us home, one of the staff members asked me where I worked, and then it dawned on me. I had worn my navy scrubs: the color worn by RNs. Mom always told me to dress for success. I guess first impressions are important.
While I had her on the phone, I told her that I also needed to order some Corpak Y Extensions to connect the tube feed tubing to the G-tube. She told me that she could not provide this item without an order from Dad’s primary care physician. I told her to forget it and that I would just buy them myself. She proceeded to lecture me about how I couldn’t just walk into a Walgreens and buy these supplies. During our call, I had my iPad sitting next to me, which I reached for during my lecture. She required a couple of minutes to complete her paperwork for the exchange order. Before our call had ended, I had placed an order with 
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.
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 
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 
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 
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.
His dialysis session was happily uneventful, with no extra bleeding or trips to the hospital. To top it off, the ambulance was on time for the return trip, and Dad and Amanda arrived back home at 11:35 A.M., which was record time.
Although Dad seemed to like her, I wasn’t enamored with Amanda, and having a new aide would cause multiple interruptions in my work day to train another person. When the doorbell interrupted my pity party, my first thought was that I wasn’t in the mood for company, but I was relieved to see that we had just received a package from Amazon.com. Dad’s padded commode seat cushion had just arrived. The cushion was four inches thick and appeared as if it would have satisfied that 
After Paula left, Dad napped for about 2-1/2 hours. By the time that he woke up, Mom, Gale, and I had eaten dinner. It had now been a week since I had changed Dad’s trach. I wanted to change it again before bedtime and before Gale ended her week with us. During normal trach care, I’d set up a TV tray next to the bed and lay out the contents of the kit. For the trach change, I grabbed another TV tray and set up the changing kit. I mentally ran through the changing routine a couple of times, took a breath, and got started. After donning the gloves, I attached the trach collar to the new trach, applied the lubricant to the trach, loosened the obturator and told Gale to make sure that I pulled it out after I inserted the trach. Trach tubes are very flexible, and the obturator provides the stiffness necessary to insert the trach. If I didn’t remove the obturator, then Dad couldn’t breathe. Now that the new 
trach tube was ready, I removed the ties on his trach collar and then removed the trach from his throat, placed it on one of the TV trays, picked up the sterile trach tube, and inserted it. Because I was holding my breath and counting in my head, I knew that I had made the change in less than 8 seconds. Gale reminded me to remove the obturator, and Dad coughed up a huge wad of secretion, which I had been told was a good thing because it meant that the trach tube was properly placed.
October 6. Today was a special day because it was Dad’s 87th birthday. Just 
Tale of Two Parents 