For us, emergencies tend to happen in the middle of the night with how my daughter Jillian’s body goes into medical crashes. Typically, we wake up to her struggling to catch her breath and we jump into action. Here are some of our steps:
- We administer any meds we can at home to help in the emergency. For our daughter that is a nebulizer.
- We keep a bag of extra clothes by our front entry. It is the bare minimum to get me through a few hours at the hospital. That gives me something to get me through until someone can bring more things to the hospital.
- We have a plan for once we got to the ER depending on the type of emergency and what ER we go to. Our closest ER is not well set up for our daughter’s complex needs, but if we don’t feel it is safe to drive her the hour to our local children’s hospital, we will go there. If we go to our local children’s hospital I have a list of doctors for staff to inform that we are in the ER so they can come in and collaborate on what is best.
One-Page Emergency Snapshot
We have a one-page list of what my children’s medications and daily schedules are. We email these to the other people who spend time with our children so if an emergency occurs when our kids are away from us they have the basic information to provide to medical staff.
We also find the one-page list to be really helpful once admitted because we are able to hang it in the room. All the staff is able to reference it to double check medications and times.
Here are examples of one-page lists for both of my daughters. They include information on medications, feedings, feeding tubes and pumps, daily schedules, and other critical information.