There is a large debate over the safety of traveling to the hospital in an ambulance or in your own car. The main arguments being: most EMS personnel do not know enough about the disease or equipment to be handling our children during critical care. We often hear about EMS refusing to bring the BiPAP or cough assist along for the ride to the hospital. They may even start the child on heavy oxygen or even intubate them just for the trip.
For these reasons, there are parents who choose to drive themselves so they can keep their BiPAP on and cough assist close the entire time. They also know the safe way to administer oxygen to a child with a neuromuscular disease by combining it with BiPAP or cough assist.
The best option is really up to you; we personally feel that driving our child in is by far the best option because we remain in control of her care the entire time. We do not like the idea of decisions being made about our daughter's health that have not come from experience with the disease.
Before you call 911 you need to ask these important questions:
Is my child having difficulty breathing and should I do someting about it now myself?
Does the ambulance EMS crew know enough about SMA?
Will they allow me to take my cough assist or BiPAP with my child to the hospital?
Will they allow me to remain in control of the situation when EMS arrives?
Why am I going to the hotpital? What problem am I looking for them to solve that I cannot solve on my own?