Two weeks ago as I was relaxing before bed, I got a call I dreaded. The EMTs were in my mother’s apartment; she had fallen and hit her head. I got dressed, rushed over and joined them in the ambulance, and we set off for the trauma center at Elmhurst Hospital.
A CT scan and some X-rays determined that my mom didn’t have a concussion or broken bones, so the hospital released her the following morning. They had done some blood and urine tests and discovered that she had a urinary tract infection. I didn’t know that you could get a UTI from pneumococcal bacteria. I had noticed her coughing for several weeks, and wondered if there might be a connection. PCR tests for COVID and the flu were negative.
We still didn’t know why she fell, so after her Medicaid-supplied home health aides went off their six-hour shifts, my wife and kid would spend the next eight evenings with her, and I stayed overnight on an air mattress. Our family doctor listened to Mom’s lungs with a stethoscope and said she didn’t hear anything. Later that day Mom fell again, caught by her home health aide.
Elmhurst Hospital recommended a follow-up visit eight days after they released my mom. She seemed to be doing better for a few days, but the night before the follow-up her breathing was much worse. I had a hard time sleeping. The doctor heard her cough and ordered a chest X-ray.
The following day, last Friday, after the X-ray, I checked the radiology website and saw the images, but the radiologist’s report wasn’t available, only a message saying it was under review. I kept refreshing the website. Finally the doctor called me: the X-ray showed my mom had pneumonia, and the doctor recommended I take her to the hospital.
I decided to go to Mount Sinai Queens instead, where they have a bit more room. They looked at the radiologist’s report and put my mom in an “upgrade” observation room, hooked up to oxygen through a “nasal canula” – the little plastic tube that goes under your nose. We waited. I tried to get some sleep.
In the middle of the night, the doctors told me they had done a PCR test: my mom had RSV. Shortly after that, she started breathing very heavily. The doctors brought her over to the respiratory area of the emergency room and started preparing some tubes. I was a bit concerned: “You know she has a DNR?”
The staff stopped work immediately. “DNR and DNI?” I wasn’t familiar with the difference, but it turns out that DNR is Do Not Resuscitate, while DNI is Do Not Intubate. I showed them the scan of my mom’s signed order on my phone. The doctor spoke with her briefly to clarify that she didn’t want to be resuscitated or intubated – no CPR, no life support. She had discussed this with me several times: she had seen relatives on life support and didn’t want to “be a vegetable.”
What the staff used next was a BIPAP machine. It doesn’t have a tube that goes down your throat, but it forces the air down with air pressure, on a rhythm that gives you time to exhale. My mom was uncomfortable with it in general, but she was able to tell me that one of the straps was pressing against the remaining staple on her head wound, so I relayed that to the nurses and technicians, and they were able to adjust it.
After a couple of hours, the staff judged that my mom was stabilized enough to take it off and bring her upstairs to a ward called the Step-down Unit. I stayed with her until the daytime shift came on at 9am Saturday, and then went home and slept for most of the day and the night.
I woke up with a cough and a sore throat on Sunday morning. I’m pretty sure it’s the same RSV that she had; I was really frustrated because I knew how important it was to be there for my mom, but I also knew that I would get sicker if I went. My wife, who was getting over some mild sniffles herself, agreed to go instead.
While my wife was still on the train, I got a call from the hospital. I don’t want to go into more detail, but there was a situation that they couldn’t handle. My wife called me, and she couldn’t really handle it either, so I got on the train. I stayed in that hospital for five hours in my KN95, going out for a short break, trying to rest as much as I could, and when things seemed under control at 9:30pm I went home.
I woke up on Monday with pain every time I coughed. Fortunately, my mom has gotten a little bit better starting Tuesday, without me there. My kid went to visit on Tuesday and my wife visited Wednesday. Today (Thursday) I finally felt well enough to go visit her. She’s now been moved out of the Step-down unit to a regular hospital ward, but these six days have taken a lot out of her, and I’m afraid it’ll take her a while to recover.
As I was home Tuesday, in between naps, I made a connection: I’ve been doing analysis and reporting of hospitalization statistics for over a year, on Mastodon, on my blog and on a new dashboard I created this winter. I’m not an expert in any of this, but our leaders haven’t been giving the experts the support they need to make things clear to us, so I’ve been doing what I can, in an effort to avoid situations just like this one.
I’ve been tracking the government statistics on hospitalizations, cases and wastewater traces of RSV, as well as COVID-19 and influenza, trying to prevent myself and my family from winding up in the hospital. I’ve been wearing KN95 masks in crowded spaces (trains, buses, elevators) and where there are vulnerable people (hospitals, doctors’ offices, pharmacies and grocery stores). When the case counts for these diseases went up, I stopped singing in-person karaoke. The city’s restrictions on outdoor dining have made it difficult, but I’ve tried to find uncrowded, well-ventilated restaurants.
My mom got RSV and pneumonia because we live in a society with lots of people interacting, and it’s not enough just for me to take precautions. This is why I post about these things here on my blog, and on social media. And I recognize that we have a lot of work to do, especially given the current political climate.
The statistics can be a little dry; I found myself wondering what it means to be hospitalized for one of these respiratory diseases. I hope that hearing about my mom’s experience – and about my experience struggling to advocate and care for her because I’m fighting the same disease – helps you understand why it’s important to pay attention to warnings about infectious disease outbreaks and help limit the spread of these diseases.
This story also helps highlight some of the limitations of these statistics. My mother was admitted to the hospital last Friday, and that hospitalization will probably be reported as either RSV or pneumonia, maybe both. But she visited the emergency room two weeks before, for a fall. She probably fell because she fainted due to pneumonia, but that visit won’t get reported in the counts of emergency room visits for pneumonia or influenza-like illness.