Progressing to a new mode of transportation

November 30, 2015. I woke up at 3:30 A.M., and Dad and Gale woke about two hours later. Dad’s strength had returned to his pre-CDiff levels, and he was in great spirits. Today he would be assessed for an additional 60 days of home care under Medicare. He had been scheduled for this assessment last week but it was canceled when we were temporarily discharged from home care.

medicalCrossThe parade of provider assessments started with Kathleen, the physical therapist, at 10:30 A.M. She was followed at 11:30 A.M. by Janet, the occupational therapist, and at 1:30 P.M. by Stephanie, the nurse. During Kathleen’s visit, she asked how Dad was being transported to dialysis. We told her that we had wanted to use the HOP, but were still using the Scott & White wheel chair service. On October 26, we had hand-delivered our application in hopes that we could expedite the process. We were told at that time that the approval process might take as long as three weeks. We had now waited more than a month. Being able to use the HOP’s paratransit service would save us $114 per week, and we were anxious to take advantage of the cost savings. We had tried calling, but could not get through to a human. Kathleen was familiar with the HOP organization and immediately used a seemingly secret number to phone the office to check on Dad’s status. During her call, she learned that Dad had been approved on November 10, more than two weeks ago, but somehow his paperwork was misplaced and not mailed to us. We could either wait to have them mail it to us or we could stop by the office later today to pick up the paperwork.

During my lunch break, Mom and I drove to the HOP office to retrieve Dad’s ID card and a booklet of regulations. We were told that we would have to call the dispatch office to schedule Dad’s pickup times. When we returned home, Mom called the HOP dispatch office, and I happily called the Scott & White EMS wheelchair van service and canceled Dad’s pickups. Transitioning to the public transit system seemed like a huge milestone.

Shortly after Mom and I returned home from the HOP office, our dear friend Mike called to tell us that he would be passing through Temple en route to Houston from Wisconsin. I had not seen Mike since May 15, 2015, the night that Mom had her stroke. Mike is married to Rhoda, who had come to Houston to help me the day after Mom had her stroke. My parents and I looked forward to seeing him again.

At 2:00 P.M., Kristen arrived for her regularly-scheduled swallow therapy session with Dad. At the end of Dad’s session, she said that Dad was “amazing” and that she wanted me to schedule an appointment for a “cookie swallow” test, otherwise known as a modified barium swallow study (MBSS). She also said that next week Dad would advance from ice chips to applesauce. I was excited, yet scared to death. For so long we had made no progress, and some doctors said that he’d never swallow again. Now, after just a couple of weeks with a speech pathologist, he was about to make a remarkable advancement. On the other hand, after just a couple of weeks working with a speech pathologist, he was going to swallow something that could potentially set him back six months. To say the least, my emotions were all over the map. It didn’t help matters any that my father seemed to have a cavalier attitude about what was happening. He seemed to worry more about tomorrow’s bus ride than he did about protecting his airway.

Kristen left at 4:00 P.M., and after a day of visitors and therapy, Dad was ready for a nap. An hour later, he was awake and ready for happy hour and ice chips. By 6:30 P.M., happy hour and dinner were over, and we were ready for a cutthroat game of cards. Gale was on a roll and won again, although not as handily as she had the previous night.

Our bedtime routine started at 7:30 P.M., and Dad was in bed and ready for trach care by 8:00 P.M. Today, it felt like we were finally back in the groove and back on the road to recovery.

December 1. Dad did not sleep well. He was worried about today’s bus ride to dialysis. At 3:15 A.M., he was the first one awake and was eager to get up. At 3:30 A.M., he asked Gale for the booklet of rules and regulations. He had read that booklet so many times that I was certain that he had it memorized. I’d bet money that he had read the guidelines and rules more than any other HOP rider, and he’d been in possession of it for less than 24 hours.

When I came downstairs at 3:45 A.M., I was a little surprised to see him up. I was even more surprised when I returned from the kitchen 40 minutes later with a cup of coffee and saw that he was dressed and ready to go to dialysis. Needless to say, the very tired Gale was not ready. At 5:00 A.M., the parade of surprises continued when the phone rang. The dispatcher from the HOP called to let us know that the bus was en route to our house and would arrive in a few minutes. When Mom had scheduled his pickup time, she gave them the time that the bus needed to arrive at our house, which was 6:15 A.M. The scheduler interpreted that time as the time that Dad needed to arrive at the dialysis center. After we resolved that misunderstanding, the dispatcher said that the bus would arrive at 6:00 A.M. At 5:50 A.M., they arrived and pulled into my parents’ circular driveway. Mom and I watched as the wheelchair lift was lowered. The driver then wheeled Dad into the bus and ensured that the wheelchair was restrained. After Gale entered the bus, Dad paid his fare of $2, and they were off.

While Dad and Gale were at dialysis, Mom made a cake for Gale. Today was her birthday, and we wanted to celebrate it with her. Our friend Mike arrived a few minutes after 11:00 A.M. I had hoped that Dad would arrive home shortly after his session ended, but the bus did not arrive home until 12:30 P.M. Although Mike needed to be on his way to Houston, he stayed until 1:00 P.M. so that he could visit with Dad.

wheelchairShortly after Mike left, Dad was ready for a nap, and he slept until it was time for him to swallow some ice chips. As he wheeled himself from his room, he stopped by the office to let me know that I should stop for the day because it was time for happy hour.

After dinner, we presented Gale with her cake, sang to her, and gave her some cheesy gifts. Had she won at cards, her day would have been perfect, but it was not to be. Tonight was my night to win.

By 8:00 P.M., Dad was in bed and I had administered his meds and trach care. Now that he had had one successful day of public transportation under his belt, I hoped that he would sleep well.

December 2. We all had a good night’s sleep. I slept through my alarm and didn’t wake up until 4:30 A.M., and Dad slept until 6:00 A.M., although he wasn’t ready to leap out of bed even then. He was still in bed when I took a break at 7:00 A.M. to administer his meds and trach care. Dad pointed to his various tubes said that he’d be glad when he could get rid of “all of these wires.” I told him that he was in control of when the tubes would be removed. After he rolled his eyes at me, I reiterated the importance of his physical, occupational, and swallow therapy exercises, which he hated doing. After whistling in the wind for a few minutes, I returned to work and let Gale help him to get ready for the day.

An hour or so later, I heard Gale helping him with his swallowing exercises. He and Mom then ran through the exercises that Janet, the occupational therapist, had left for him.

Michell arrived at 11:20 A.M. and met with Gale so that she could catch up on the events of the past week and learn about the bus service. I think that Michell was relieved to hear that the week had been boring in comparison to her drama-week with us. After Gale left, I gave Michell a hug and told her how grateful we were that she had decided to return.

walkerGale had barely pulled out of the driveway when Brenda arrived for Dad’s physical therapy session. Brenda put him through his paces, having him walk 68 feet, march in place, stand on one foot, and stand on his toes. Dad was exhausted when she left and was ready for a nap. However, instead of sleeping until he woke up himself, he instructed Michell to wake him by 2:00 P.M.

A couple of hours after waking from his nap, Dad wanted Michell to help him with some of his exercises. I didn’t know if I had inspired him to exercise or if he was more interested in exercise because he was feeling better. The reason didn’t matter to me, as long as he exercised.

After happy hour and dinner, we played cards. Michell was tonight’s winner. By 8:00 P.M., Dad was in bed and practically asleep.

December 3. Dad was up at his regular time for a dialysis day and was ready when the HOP paratransit bus arrived at 5:40 A.M., which meant that Dad would be at dialysis almost an hour before his scheduled chair time. Ideally, he would be home an hour earlier, too.

I worked for about six hours and then packed up my laptop and drove back to Houston. Tonight was the last night of the semester for my photography class. I had missed most of the semester, and I wanted to attend the final critique. Not only did this class represent some remnant of normalcy for me, I wanted to share some of the holiday biscotti that I had baked.

Dad was finished with dialysis at 10:30 A.M. and was on the bus by 11:00 A.M., but because he was the last stop, he and Michell didn’t arrive home until almost 1:00 P.M. By 1:45 P.M., he was ready for a nap. While I was in Houston, Michell would assume responsibility for the trach care and meds. As has been the case with Gale, I had laid out all of the instructions and refilled the pill dispenser. I would be gone for less than 24 hours, so Michell and I both felt that she would get along fine without me.

During happy hour, Michell prepared more ice chips for Dad. After dinner, the three of them played Oh Hell, and Michell won again. After administering the meds and trach care, Michell had Dad ready for bed by 8:00 P.M. and he was asleep before she was ready for bed.

Unfortunately, Dad didn’t stay asleep very long, and by 11:50 P.M. he was fast awake. When Michell asked him why, he told her that he was thinking about problems. Fortunately for both of them, he drifted back to sleep within 30 minutes.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s