I last blogged on the plane as we were flying back to Oklahoma, where we faced an ongoing battle with Susan’s health and medical care. The details are mostly unimportant now, looking back. What is to be learned and gained from it all is that each of us must be proactive in our own health and health care and we (caregivers and parents) must be proactive on behalf of those we love and those who cannot fight for themselves.
What put Susan in the hospital is questionable, in my estimation. They attributed her original weakness and fever to a UTI (urinary tract infection). The truth is that she had already been on antibiotics for it for several days prior. Then, her new intravenous antibiotic caused a severe allergic reaction that overtook everything else. Kiara, Ted and Megan did a great job of following Susan’s care and corresponding with the doctors in our absence. They sat by her bedside, fed her, and kept everyone informed and updated.
After I arrived, a discussion with her hospital doctor clued me in that he was not a good listener. He arrogantly had preconceived ideas about Susan’s condition. He told me that she had another neurological disorder that would cause her to never walk again, but couldn’t be more specific when I pressed him. He would not consider physical therapy even though I assured him that she had been independent only a week earlier. He insisted on releasing her and (after learning she would not be put in a home) recommended a temporary facility where she could regain her strength before returning home.
Although I was opposed (at that point) to any talk of putting her in a permanent nursing facility, a temporary facility that would enable her to build enough strength to return safely home, was considerable; but not without my approval. So, Megan and I left the hospital and (without warning) drove to check out this place the doctor had chosen. I was appalled at the conditions and knew that NO MATTER WHAT-Susan would never be a patient there. I would rehab her myself, if necessary!
I made some calls to friends who had required similar rehab in the past. We made another unexpected visit to a facility they highly recommended. There, we found professionalism, cleanliness, courtesy, a homey atmosphere and a great rehab department. The following morning I made a call to my hospital contact person and put in our request. By the afternoon Susan had been accepted into the new facility and was on her way.
Jeff and I set up her room, tucked her weak self into her new bed and explained things to Susan in a way she might understand. We told her that this was a special place she was chosen to go to- just until she could walk again. We assured her that she would come back to our house when she was ready. She asked many questions and we answered. She was happy; so were we. I will admit that I worried all night about getting a call to pick up Susan because they don’t accept wanderers or combative patients. I was pretty sure she was still too weak to fall into those categories.
The next morning Megan and I headed for the rehab facility across town. I didn’t know what to expect since everything was new to us and to Susan. I hoped for the best. Of all the concerns I had had, I would have never guessed at what we did find! Susan was not in her room; she was in her chair at the end of the hall. A therapist walked us down toward her as she explained that Susan seemed to have a fever today and they had already put a call in to her doctor.
My first glimpse of Susan sounded the alarms! I leaned in toward her and touched her face, “Susan, Are you alright?” My reaction must have alerted the physical therapist that something was off, since she began explaining, “We weren’t sure what was normal for Susan since we don’t know her.” Susan’s entire body was rattling and her mouth was open with her upper teeth dropping up and down over and over as she shook. Her skin was an odd blotchy red and spreading. “Something is wrong with her. This is not normal for her!” I warned. More calls were made. Jeff arrived to a scurry of people making calls and checking on Susan, followed by an entourage of emergency responders in our faces asking questions as Susan grew worse and worse. By the time she was taken back to the hospital by ambulance, she was delirious and could not hold her head up.
They again tested her for a UTI- negative. Pneumonia was the diagnosis this time. She spent five more days in the hospital. She has now been home for two days. We chose hospital to home (rather then a rehab facility), since we had gotten her up ourselves and walked her down the hospital corridors. (We refused to believe she would never walk again!) Too bad we didn’t run into the first doctor, who could use a good lesson in listening skills.
