Many of us have been in the ER or hospital with our child and found ourselves teaching the nurses and doctors how to care for our child’s complex needs. Each of our kids is so unique and there is always something specific that helps the situation. If people get to know our child and these specifics, they are better at providing care.
But what if you have to call 9-1-1 for your child? Have you wondered if the responders would be prepared for your child’s needs?
My daughter, Casey, had a lot of medical needs. It would take us weeks to train a nurse on her airway and positioning. When we were admitted, we typically managed all her basic needs and just relied on the hospital for the big stuff.
We tried a few hospitals over the years and realized that there is a HUGE difference between the staff at a children’s hospital versus the staff at a general hospital. For Casey, we only went to children’s hospitals because they were better at dealing with all family and kid issues.
The idea of calling 9-1-1 was terrifying to us.
Emergency Medical Services (EMS) personnel are well trained and very good at what they do. They must be able to go from a heart attack one minute to a car accident the next. They treat every age and every possible issue. But I worried that if I had to call them, they would not know what to do for Casey.
We had a modified out-of-hospital DNR for Casey. We worked very hard to make sure that it was done properly so that it would be respected if we ever had to call 9-1-1. While talking with some of her doctors, we learned that if it did not appear to have been done properly, the 9-1-1 responders would not be able to follow it and would instead have to follow their standard of care.
One of Casey’s doctors suggested that we go and visit our local fire department. What a great idea!
When we went to the local fire department, we took a copy of the OOH DNR with us. The firemen came out to meet us, and we told them a little about Casey. They flagged our address in the 9-1-1 system so that if a call came from our house, they would know ahead of time that it is the home of a child with medical complexity.
They also told us about OOH DNR devices. The devices are special medical alert bracelets that indicate the patient has an OOH DNR. They said that many families scramble to find the OOH DNR when an emergency occurs. It is much easier to show the responders your bracelet than search the house for a piece of paper.
After we met with our local fire department, I felt so much better. I still hoped that I would never have to call 9-1-1, but if I did, I felt like they were much better prepared for the situation.
If you have a medically complex child, with or without an OOH DNR, I strongly suggest going and meeting your local fire department. It only takes a few minutes, and it could make a HUGE difference.
Here is an article from a professional’s perspective with valuable information on emergency preparedness for children with disabilities.
Presuming competence means assuming a child with a disability can understand just like anyone else. It means that you don't underestimate the child. Here's why this matters so much.
Here is one mom’s story about the personal changes she made to become an advocate for their child.