At the LTACH, the doctors and nurses didn’t like how fast my mom was breathing. Her respiratory rate was higher than they would expect. Her rate was the same as it was at the hospital, but these doctors had different standards for weaning someone off a ventilator. Because she was breathing so fast, the LTACH decided to sedate her further to slow her breathing. If you are sedated, you also have to be back on full support of the vent. My mom’s swelling also was increasing and she didn’t look good. She developed a UTI from the catheter and found that her kidneys were failing again. Seeing the downward progress, I decided that it was time to go back to the hospital she had come from—the place where she was making some progress.
On the morning of 10/13/23, I asked (really more cried) to everyone who would listen that my mom go back to the hospital. She had only gotten worse since being here. She wasn’t coming off the vent. In fact she was going in the opposite direction–she was getting sicker. The nurses told me that they wouldn’t send her back to the hospital. There wasn’t anything going on that couldn’t be dealt with here. They said they’d talk to the doctors about my concerns, but the answer would likely remain no.
I left the LTACH to go to a meeting and, when I came back 4 hours later, I couldn’t go in her room. The same nurse I spoke with earlier told me not to leave and that I’d want to be here. Suddenly I heard a code being called and many more people rushing into my moms room. They told me that they were calling 911. When they were putting in the dialysis catheter, my mom became unresponsive and her breathing was mimicking agonal breathing. Agonal breathing, for anyone who has taken CPR, is usually described as final breaths.
I stayed with my mom until she was in the ambulance and then followed her to the ER at the nearest hospital (facility number 3). This was actually the hospital where my dad had worked for over 30 years. It was also the same hospital where he passed away. It wasn’t my favorite, but at least they knew my family here. As soon as she arrived, I was allowed to go back with her. After some tests, the ER doctors found a possible stroke, a very bad UTI, and that she needed emergency dialysis. This time, dialysis would end up lasting three weeks. Even though this new facility, we had some of the same doctors. Luckily, her pulmonologist (The Dooms Day Doctor) had privileges here and retook over her case.
Being at a new hospital felt like starting from square one. The pulmonologist said he would resume weaning her off the vent and would be more aggressive now. We were seeing such great progress before and this most recent set back was not a result of weaning from the vent, but complications from being bed bound. This led him to believe that we needed to be more aggressive with weaning, not less. With our doctor back on the team, we started to see progress again. My mom was back to being awake most of the time, almost off the vent and regularly trying to talk. She was regaining mobility with the help of daily exercise. We were so proud of her progress. We asked about the possible stroke, but further testing was inconclusive and the doctors did not believe she had a stroke recently.
Around this time, I got the call from case management that she needed to go back to the LTACH. After the previous 10 day stay at the LTACH with nothing but backward movement, I stood my ground this time. I asked if we have a right to refuse to leave. One doctor looked at me and said “I’m not supposed to answer that question.” Good enough for me. If my mom didn’t get off the ventilator, nothing else mattered. If she went back to the LTACH, but stayed on the vent for the next year or more, she might has well not make it at all. My mom did not want to live on a ventilator—mostly people wouldn’t. I spoke with case management, the supervisor of case management, and the LTACH intake coordinator. I told them all the same thing, we are staying where we are. She is getting better where she is and I’m not going to move her back. They told me that this decision might have financial consequences, but I would have paid anything to save her life.