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.

 

What’s next, flying monkeys?

November 24, 2015. Dad and Michell woke up at 4:15 A.M. Dad still had some problems overnight, but I hoped to have him on the road to recovery quickly. I had Michell administer the trach care again this morning. I had to assist her a couple of times, but she was a little less nervous than she had been during her first attempt last night. During the administration of Dad’s morning meds, I added a couple of crushed Imodium tablets. Dad and Michell were able to get ready without much difficulty.

flyingMonkeyKristin, Dr. Pfanner‘s nurse, called to tell me that the doctor had decided on an antibiotic for Dad that would take a couple of weeks to clear up the CDiff. The nurse also provided me with some guidance about laundering and cleaning anything that Dad had come in contact with. She also recommended that we purchase some isolation robes to protect ourselves and encouraged us to wear gloves. I told her that we would abide by her guidelines, but it sure seemed like the horse was already out of the barn. Dad had probably been sick with CDiff for several days. Because prolonged antibiotic use probably contributed to Dad’s CDiff, before hanging up, the nurse encouraged me to contact Dad’s pulmonologist to see if they would change his antibiotic. This was a difficult request. We weren’t going to meet Dad’s pulmonologist for a few weeks. I also thought that it was the infectious diseases doctor at the hospital who had prescribed the doxycycline, and I didn’t know when or if we would see her again.

I thought that the dialysis nurses should know about the diagnosis. I texted Sue, our friend and nurse practitioner at the dialysis center, to let her know that Dad had tested positive for CDiff.

flyingMonkeyWhen Dad and Michell returned home at 12:15 P.M., Dad was in a rush to get to the bathroom. As I was pushing him past the piano, I caught his hand between the wheelchair and the piano and gouged him good. His skin was very fragile and susceptible to tears, so now he was also bleeding. Because I had already helped enough, I left the chaos that I had created and drove to the pharmacy to pick up the antibiotic prescription. I returned around 12:30 P.M. and gave Dad his first dose of Flagyl. When I had a couple of minutes to talk with Michell, she told me that Dad had had 1,100 ml of fluid removed during dialysis. With his weight so low, this news wasn’t good, but at least the quantity wasn’t excessive.

It was Thanksgiving week, and I was working half days, starting at 3:45 A.M., so my day was over by the time that Dad returned from dialysis. Michell, Mom, and I ate lunch, and then I resumed the baking that I had started yesterday.

flyingMonkeyAt 4:00 P.M., Mom tried to wake Dad, but he just grunted at her. He finally responded when she told him that he had his head on his sore hand—the one that I had injured. He then tried to get up by himself to go to the bathroom, which he’s incapable of doing. Michell tried to help him, but he told her to get out of his way. She finally got him into the wheelchair, and he kept telling her (and now me) to get out of his way. Michell kept trying to help him, but he kept shoving her away. She then got him the walker, but he pushed it into me and told me to get out of his way. During the arguing and raised voices, he called me by my mother’s name a couple of times, which I found a little disconcerting. He kept insisting that he could walk by himself. I finally stepped back and told him to walk. It took him about one second to realize that he couldn’t walk, and then he let us help him, although he still didn’t seem like himself.

In addition to the drastic personality change, he woke up looking different and years older than he had just four hours earlier. I checked the printout of precautions and side effects that came with the meds, and a couple of the severe side effects included confusion and irritability. I called Dr. Pfanner’s office and talked to the nurse about his drastic change and our concerns, and she said that she would consult the doctor and call back. When she called a few minutes later, she said that we wouldn’t like the answer, but the doctor wanted us to take him to the ER.

And then it got crazy.

When I called 911, I told them about Dad’s symptoms, and mistakenly used the word aggressive to describe his behavior. The 911 operator then started asking questions about weapons and alcohol and drug abuse, but I assured him that we didn’t have those concerns. Before hanging up, the 911 operator asked whether I felt safe hanging up the phone. I assured him that I did and made a mental note to never use the word aggressive during a call to 911.

flyingMonkeyJust a few minutes later, I heard the sirens, and a black SUV belonging to the sheriff’s department turned into the driveway. The deputy told me that the sheriff’s department is called whenever 911 receives a psych call. I assured him that I had not placed a psych call and that my father did not pose a physical threat to us. While we were talking, the deputy spoke into his shoulder mic and told two other deputies to “stand down.” Moments later the first fireman from Little River-Academy arrived. A couple of minutes later, the ambulance arrived, followed by another Little River-Academy fire truck. The EMTs, deputy, and I chatted on the front porch about Dad’s willingness (or not) to go with them. They asked about Dad’s wife and whether either of us had medical power of attorney, which we both possessed. The entourage of deputies and EMTs followed me into the bedroom, and I was able to talk Dad into going to the hospital. Michell rode in the ambulance with him and Mom and I followed them in my car. We sat in the driveway for what seemed like 10 minutes before the ambulance finally pulled out of the driveway. We finally arrived at the hospital at 6:00 P.M.

EMTs take the patient into the hospital through a designated door, separate from any visitors, including those who ride in the ambulance. I parked the car and Mom and I met Michell in the waiting room. While Michell left us to find a restroom, Dad, Mom, and I were ushered into an exam room. When the nurse arrived, I told her about the events of the day. When the resident, Dr. Stephanie Katrin Clark, arrived, said that Dad’s mentation problems could be from the CDiff and not the meds. She then ordered a chest x-ray to see if the lack of lung capacity was causing his confusion. She also ordered an EKG. Finally, the nurse arrived to take Dad’s blood. It was then that we learned that the reason why Dad’s ambulance stayed in the driveway so long was that the EMT was starting an IV. Having an IV in place simplified the nurse’s task, and she quickly acquired the necessary samples and turned them in to the lab shortly before 7:50 P.M. Before the nurse left the room, she started Dad on a saline drip.

At 7:49 P.M., I texted Sue to inform her that Dad had had 1,100 ml removed this morning and that he was now in the ER getting 500 ml of saline. I didn’t know if she could provide us with any information that might help our situation.

flyingMonkeyA little over an hour later, Dr. Clark returned to the exam room and said that she wanted to admit Dad. She said that his blood pressure was soft and he seemed dehydrated. I told her that we had to be home tomorrow for his 60-day home-care assessment. She said that she would give him another 250 ml of saline to improve his blood pressure. The next thing I knew, a tech arrived and said that she was to take Dad to radiology for a CT scan. I told her that it was our understanding that Dad could leave after he had received the 750 ml of saline and that I didn’t want him to have a CT scan. I also told her that he was out of Medicare days (and S&W Senior Care days), so admitting him was out of the question. After the tech had left the room, I explained to Dad and Mom that Dr. Smith had told me that Dad’s CT scan in August had not been normal, but he had then added that the CT scan of someone his age wasn’t normal anyway. I didn’t trust this doctor to say that the results of a CT scan weren’t normal, which would be another reason to admit him.

Shortly after the radiology tech left the room, we heard a knock on the door and a woman entered, identifying herself as the social worker and a problem solver. I again explained why we had to go home. My argument didn’t seem to sway her, so I told her that Dad was uninsured and that unless she could pay his hospital bill, I wasn’t interested in anything that she had to say. She left the room and returned a couple of minutes later with Dr. Clark and with the charge nurse. The doctor then informed me that Dad had suffered a heart attack. Today would mark the second time since July 22 that I had heard this, and I suspected that she was no more correct than the previous doctor had been. When I pressed her for details, she said that his numbers were elevated so that he might have suffered a heart attack. She also said that his kidney function was very high and that according to his medical history, he was very sick. I explained that his kidneys were in terrible shape and that he was ERSD and on dialysis. One of our problems was that the Scott & White Home Care department was not on the same records program as the hospitals, so the latest information accessible to the medical staff at Memorial was from September 29, some 57 days ago.

flyingMonkeyThe social worker and charge nurse explained to us that to take Dad home, we would have to sign an AMA, which would ensure that he could not be recertified. They had effectively trapped us into a no-win situation. We didn’t trust them or the hospital, and even if we did, Dad was uninsured, and we had to get out of there. I told them that I wanted to make some phone calls. I called the Home Health after-hours phone number and told them about our situation. I was transferred to Leo, the night nurse who had originally admitted Dad into home care. My phone died, and when I used Mom’s phone, Leo and I kept getting disconnected. When the nurse returned to the exam room, we told her that we would sign the AMA so that we could take Dad home.

At 10:38 P.M., I texted Sue again and told her that Dad had been dehydrated and that we might need to rethink the amount of fluid we’re pulling off of him, especially when he has diarrhea. At the rate that he was receiving fluids at the hospital, it wouldn’t be long before they replaced everything that had been removed during dialysis.

Eventually, the nurse came back, and my mother told her that we were ready to leave. After we signed the AMA, the nurse removed the IV lines and called for an ambulance to transport Dad home. About 30 minutes later, the EMTs arrived with a gurney. Mom and I recognized both of the EMTs. One of them had been by the house several times and the other, a woman, had brought him home from dialysis earlier today. When the EMTs took Dad to the ambulance, Mom and I passed through the waiting room, where we found Michell, who had been waiting patiently for almost five hours. Michell quickly left the waiting room and joined Dad for the return ride home in the ambulance. Fortunately, we had been able to text with Michell, so she had some idea of what was happening.

The four of us finally arrived home around 11:15 P.M. I started cleaning up in the kitchen and toasted the biscotti that I had baked earlier. We were hungry and too wired to sleep, so Mom also prepared a plate of cheese and crackers. Michell was with Dad in the bedroom. The poor guy was suffering from CDiff and had been trapped in the ER for more than five hours.

flyingMonkeyAt 11:45 P.M, we heard a loud pounding at the door. I peeked around the corner to see if I could tell who was at the door and was momentarily relieved when I saw the uniform of a sheriff’s deputy. When I opened the door, I met Deputy Ryan Blankemeier. He said that his department had received a call that we had taken Dad home from the hospital too soon and he was here to ensure that my father was OK. Deputy Blankemeier looked pretty confused when I told him that it was the nurse at the hospital who called for the ambulance to transport Dad home.

I told the deputy that Dad was on the commode and that he would have to wait until Dad was decent. From where we were standing in the hall, the deputy could hear Dad and Michell talking. After a while, the deputy said that he felt like he could leave, but I insisted that he stay. Eventually, Dad was decent, and I escorted the deputy to the bathroom to see him. I told Dad that the deputy wanted to ensure that he had gotten home OK. He said that “she” got home OK. I told Dad that it was him that the deputy cared about, and Dad said that he was fine, but it was “touch and go there for a while.” Dad laughed, and the deputy smiled. I eventually escorted the deputy to the front door shortly after midnight.

It was well after midnight before Dad was in bed and approaching 2:00 A.M. before I got to bed.

I hadn’t realized how upset Michell had been about the day. I had mentioned in an earlier post that she was astonished when I openly disagreed with a doctor. To sign an AMA and bring Dad home, followed by the visit from the sheriff’s department, was just a bit too much for her. After Dad had gone to sleep, she called a friend and cried about the day and then cried herself to sleep. At this point, she wasn’t sure if she would return next week and would have to pray for guidance. I hoped that she said a prayer or two for all of us.