Amara has had pneumonia probably about 60 to 100 times. She has had over fifty hospitals stays. Maybe close to sixty. We lost count at 24 hospitalizations. She was three years old at the time. I remember her pediatrician once telling me he knew it was over forty. She was five then. So, let me tell you why I am terrified. But first let me tell you about the worst 24 hours of my life.
Amara was ten months old. (I am not even calling her Feisty Pants for this post. She is more than just my daughter, she is an amazing human being and deserves for you to know her name.) She had already had six hospital stays by then. I think. It was December 8th. 2003. I had gone to bed around 2 am with her seeming just a little bit under the weather but no biggie. At four am as I was just drifting off, my husband was yelling for me to get up and call the ambulance. (not the first time) We went to the ER. She received a few breathing treatments and several hours later were sent home. A few hours after that she started breathing very rapidly and shallowly and I had to call 911 again. After several hours in the ER, they had decided to transfer her to another hospital. I came home (leaving her dad with her) to shower and pack a suitcase. I was just getting out of the shower when my husband called in a panic. He just kept screaming, "Get here now! Get here now!" I dropped everything and ran out the door. No coat, no bra, no boots- just sweats and shoes. When I got to the ER- it was essentially shut down to visitors. When I came in security at first stopped me until someone said, "No, let her go. She's the mom."
They thought my ten month old baby was dying. She was being intubated as I walked in. The hospital had no pediatric ventilator. A respiratory therapist sat with an ambu bag and squeezed air into her lungs for hours until his hands cramped so badly he had to get another rt so he could go ice his hands. The three nearest children's hospitals were full. (Syracuse, Albany, NYC) Rochester agreed to admit her but could not send a helicopter due to weather. It took four hours for the ambulance with a pediatric ventilator to arrive. My mother in law and brother in law happened to swing by the hospital and were mistakenly told by someone they knew who worked at the hospital that Amara had died.
The ambulance crew showed up around midnight. We probably got to Golisano's Childrens about 4-5 am. The doctors there thought perhaps she didn't need a vent and they could use another type of breathing assistance. (I don't remember which one they wanted to use.) So they came in to extubate her. It failed. They had to do cpr on her and re-intubate her. They don't usually have the parents in the room when they do this. They forgot to ask me to leave. Half way through the chaos I heard someone go,"Who is the woman in the corner?" A nurse said, "Oh my god. It's the mom." Some resident rushed me out of the room.
I sat in a little waiting room. I had no cash on me at the time. I hadn't slept in three days. I was wearing raggedy sweats and no socks with my shoes. It was Rochester in December. And I had just watched them do CPR on Amara three weeks before her first Christmas. A doctor later told me I was eerily calm. I was simply too scared to breathe until she did.
So, let me tell you why I am terrified. Let me tell you why hospitals don't have the equipment they need. It's all about money. Every cent they spend on equipment means less profit. Every ventilator has to have technicians and therapists and nurses who are trained to use it. Children and adults don't use the same one. Hospitals usually only have a few because when hospitals aren't very full they just transfer those patients who need a higher level of care to a bigger hospital. That way they "keep their costs down" which is code not for saving money but for saving profits. A for profit health care system does not care about saving lives on a managerial level. They care about saving money. That s why they are run by executives instead of doctors and nurses.
And these type of decisions don't just mean they have fewer ventilators, They have less meds, less masks, less specialists, cheaper gowns, cheaper food, fewer nurses and so on.
So when a hospital is run on a shoestring as it were- with the smallest amount of equipment and supplies and staff necessary for an average week, what happens when disaster or pandemics strike?
What happens is they run out- of ventilators and equipment and medications and doctors. And decisions must be made such as who do we let die? How much effort do we make? Who gets the last ventilator? Who doesn't get the medication? How often does someone even bother to look in on a patient?
The elderly and the disabled are ALWAYS the most likely to lose in that dreadful situation.
But as long as there is money to be made, it's ok. We'll thank them for their sacrifice.
THAT'S why I am terrified.
