November 25, 2015. After not getting to bed until 2:00 A.M., the morning seemed to come very soon. I had worked for about an hour when I heard Dad and Michell waking up at 6:00 A.M. I took a break from work to administer Dad’s meds and trach care. My plan had been to work half days this week and then bake for the remainder of the day.
I was worried about the events from the previous night, so at 8:00 A.M., I called the Bell county sheriff’s office to see who had requested our visit from Deputy Blankemeier. After a couple of minutes, a very pleasant woman at the sheriff’s office told me that Adult Protective Services (APS) had placed the call. As I hung up the phone, I called for my mother to tell her what I had learned and that I was fairly certain that we were up the proverbial creek.
Only a few minutes later the phone rang, and it was Tracy, our nurse. Instead of calling to see what time she could stop by, she was calling to tell me that because we signed the AMA last night, Dad had been discharged from Home Care and that all of the appointments for the day were canceled. I felt physically ill, and it seemed as if my peripheral vision was closing in. Being discharged from home care meant that Medicare would no longer be paying for all of the equipment in our house and that all of Dad’s therapies would cease. The financial and health implications were enormous, and I felt guilty for putting us in this position. I should not have taken Dad to the hospital, regardless of what Dr. Pfanner’s nurse had said. I asked Tracy how we could get Dad reinstated. She told me that the only way that we could get readmitted was to have a doctor refer us again. I asked her if it had to be the same doctor, because we hadn’t seen the CCH doctors in two months. She checked and called back, saying that any doctor would do.
I indulged myself to a mini panic attack, and then I remembered our friend Sue, the nurse practitioner at the dialysis center. It was 8:30 A.M., so I called her cell phone. Not knowing that Sue was a night owl, my phone call woke her. Because I had texted her last night from the hospital, she knew that Dad had been in the emergency room. When I told her about our current situation, she came wide awake and said that she and Dr. Issac would refer us. She said that she could not make the referral, but she could write the order and Dr. Issac would sign it. The referral seemed to move from Sue to the Home Care office at warp speed. In a matter of minutes, Tracy called and said that she would arrive shortly to readmit Dad to Home Care. She arrived a few minutes after 9:00 A.M., just 30 minutes after my call to Sue.
Feeling like I could exhale again, I returned to work. Within 20 minutes, the doorbell rang, which was not unusual with all of the deliveries of medical supplies. A couple of minutes later, my mother entered the office and told me that an agent from Adult Protective Services was here to investigate our case. I took a deep breath and went to the family room to meet Brandi. She and I were quickly joined by Mom, Michell, and Dad. With a little assistance from Michell, Dad moved his wheelchair next to my chair. Brandi told us that although charges are made anonymously to APS, we could probably figure out who claimed that we were jeopardizing my father’s well being by removing him from medical care against best medical advice.
Before I responded to the charges, I felt that I needed to establish my credibility as someone who could be entrusted with the care of my father. I told her that I was very familiar with Child Protective Services (CPS), a similar state organization. Not only did I have friends who worked at CPS, but my husband and I had also been licensed by the State of Texas through CPS to adopt and foster children. I then proceeded to respond to the charges by listing all of the stellar medical advice that we had received from Scott & White, beginning in late April, and explained that because of our experiences, we were hesitant to accept medical advice. At the end of my story, which I relayed from copious notes on my iPad, she asked me why we still used the hospital. It seemed that she had also had a bad experience with Scott & White. The truth of the matter is that in central Texas, patients don’t have any decent viable alternatives. For all intents and purposes, Scott & White is the only game in town. At the end of our hour-long meeting, she said that she was closing the case as “an invalid claim.” Before she left, I gave her Sue’s office number so that she could speak with a health care provider who saw Dad on a weekly basis and who knew about the care that we were providing my father. I learned later that she had indeed called Sue before she closed our case.
I still hadn’t given dad his second dose of Flagyl. Because I had been concerned that Dad had had a bad reaction to the Flagyl, Dr. Clark had written me a prescription for a different antibiotic. I called Dr. Pfanner’s office and talked with Angie, the nurse, and she said that she would defer any decision about the two antibiotics to the nephrologist. I called Sue again and she urged me to give Dad the Flagyl. She said that Dad was probably dehydrated or was suffering from “dialysis dementia.” She was surprised that we hadn’t seen it earlier. She also said that until Dad was over the CDiff, they would limit the removal to 1,200 ml and then add fluid, which meant that I no longer had to worry about him becoming dehydrated from dialysis.
During Tracy’s visit earlier this morning, she told me that our aides needed to wear gowns when they cleaned up after Dad. American HomePatient didn’t have any, so I ordered some gowns from a company that I found on the internet, but they wouldn’t arrive for several days. In desperation, I drove to the dialysis center and spoke to Susan, Dad’s dietitian, about my dilemma. I asked her if I could borrow a few gowns and pay them back with new ones when I received my order. She left for a few minutes, and when she returned, she handed me an entire pack and told me that Sue said that we didn’t have to give them any of our gowns. As much as I complained about Scott & White, they did employ a host of angels of mercy.
Michell left this morning shortly after Gale arrived at 10:00 A.M. Before she left, Michell told me that she didn’t know if she would return and that she’d have to pray on it. Not only was she upset by Dad shoving her yesterday afternoon, but the deputy storming the house last night, followed by the investigation this morning, had shaken her up and taken her very much out of her comfort zone. I would do a little praying myself during the next week.
We spent the next hour updating an incredulous Gale about the events of the previous 24 hours. I wrapped up my day of work and finally logged off for the Thanksgiving weekend.
After lunch, I retired to the kitchen to bake some more biscotti. Gale worked with Dad on his exercises prescribed by Janet, the occupational therapist, and Kristen, the speech therapist. Gale also crushed ice for him to swallow.
By 2:30 P.M., Dad was ready for a nap. About an hour later, he was up from his nap, and he was ready for happy hour by 5:00 P.M. Since he had started swallow therapy, he had become a more active participant during happy hour and used this time to swallow ice chips, although he complained of a cold mouth.