Calling 911 brings help, right? For most of my life I have understood that to be true. Growing up in a small Ohio vacation town as the daughter of a police officer and volunteer firefighter I was familiar with the world of emergencies. Multiple summer mornings I woke to the scanner tones and heard the dispatch give our address as the location of the call. The first few times it happened I flew out of bed in a panicked pursuit of a stricken family member only to learn it was someone at our front door looking for help. Symptoms of a heart attack. A fishhook caught in an arm. Heat stroke. A Lake Erie rock thrown at the back of a head. Our porch steps were an open triage unit if the police car was parked in front of the house. If my step-father called for additional help and a transport to the hospital, our small yard filled with black cases of medical equipment, a gurney, and the guys who graduated high school a couple years ahead of me who were now volunteering. 911 called. Help arrived.
That paradigm might have been turned completely upside down on Nathaniel’s first night home.
When I originally wrote about Nathaniel’s first night home, I wrote about the arrival of the fire department and ambulance and how one particular medic’s calming manner helped me to focus and moved us to the ambulance and hospital for needed evaluations. There is more to the story. Pieces that I have slowly put together and processed over time. Some pieces that I more fully understood just this week after Nathaniel and I spent three mornings at our local firehouse helping to train first responders in pediatric tracheotomy emergencies.
The night of our emergency I learned that first responders often do not know how to handle pediatric tracheotomy emergencies. The man in the white shirt, the one who told me he was in charge in my house with a room full of people and an out of control private duty nurse, told me differently when we were alone in the back of the ambulance. “I do not know how to care for an infant with a tracheotomy tube, but I can follow your directions. I will do everything exactly as you tell me. What do we need to do next?” he asked.
The medic did everything right that night. He spoke calm and reassuring words that revealed his lack of preparation, but also pledged that he was not going to leave me or panic. In the setting he created, I was able to explain how to care for Nathaniel. Nathaniel is very fortunate that medic was working that shift. I recently heard a story similar to ours. First responders refused to listen to the parent insisting her child needed an emergency trach tube change. A police officer on the scene restrained the mother as the medics put the baby in the ambulance hoping to get to the hospital before having to deal with the trach. The child went into cardiac arrest due to oxygen deprivation. I cannot write those sentences without tears whelming up in my eyes. That child was a victim of a system gone wrong. Insurance companies push medically fragile children out of hospitals and into under prepared communities. Communities where nurses run from the room yelling that we have to wait until medics arrive and medics might not know to trust parents or exactly how to offer help and suddenly everything we’ve ever believed about calling 911 gets completely turned upside down.
When first responders arrived at our home that July night, our nurse held up the trach tube that Rich and I had just removed and announced, "It's not my fault. He had a mucus plug." Fault and blame and defensiveness are reactions after a crises. Children with tracheotomies do not have a wide window for after crises mitigation. They need prepared caregivers and prepared nurses and prepared first responders. All three mornings this week the firehouse training started by asking for a show of hands of those trained for pediatric tracheotomy emergencies. Approximately ten to fifteen first responders were present at each training. One hand went up.
I am constantly aware of how God goes before Nathaniel making a way where there seems to be no way. And He has done it again in this area. A medic in our ambulance district recently decided something needed to change for special needs children. She partnered with Cardinal Glennon Children's Medical Center, secured a large grant from the Infant Mortality Foundation, and started a pilot program to address the problem. Pause a moment. A pilot program for special needs children started right here in Nathaniel's fire and ambulance district. Isn't God good? S.T.A.R.S (Special needs Tracking & Awareness Response System) is a program designed to identify special needs pediatric patients in the community and connect them with their ambulance, fire department, and community hospital. We met with medics a few weeks ago and went over important information about Nathaniel. An action plan was created, PRIOR to an emergency, and training was offered specifically for Nathaniel. Being invited to that training is why we spent three mornings at the firehouse this week.
The program needs to expand. Every department in the region, no, let's go big and say every fire department and ambulance district in the state, should have access to Nathaniel's information so they can walk into our emergencies prepared, where ever those emergencies happen. If doctors and insurance companies are going to send trach kids home with instructions to call 911, every first responder needs trained on pediatric trachs.
For our part, Nathaniel and I plan to hang out with first responders every chance we get. To tell our story. To demonstrate suctioning. To let them talk to a trach parent and ask questions and build relationship and learn to trust in those of us who specialize in the daily management of pediatric tracheotomies. To let them fall in love with a trach kid. Because these kids and families need multiple and deep layers of community support. And because 911 should always mean help is on the way.
Update: The St. Louis Post Dispatch ran an article on the STARS program on April 11, 2015. Read it here.