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.