What exactly is a mucus plug?
Mucus plugs are the single scariest thing to a parent or a caregiver of a child with SMA.

It is a condensed ball of very thick secretions that blocks your child’s airway. To put it in simple terms, it closely resembles a hairclog occluding or blocking your sink drain. There is enough room for some of the water to pass but not enough to keep the sink clear.  The plug itself may not be reachable by a suction catheter.  Plugs can occur in the bronchial tree deep into the chest.  This is why the Cough Assist is so vital to restoring their airway.


keeping SMA healthy

How do we survive sick season?

No, people probably aren’t going to like it and, yes, they are probably going to fight you the whole way

The CDC says that cold and flu season PEAKS in November and goes through April. However, for SMA families the preparation begins long before that. We can’t wait until there is a sickness already upon us because by that time it may be too late. So we prepare. We prepare to become anti-social hermits, all to save the lives of the children we love so dearly. Whereas you can control who will socially enter our home, such as friends and family members, what do you do about those that are directly involved in the care of your child, i.e. therapists and nurses? There is a process that will help insure that your child will be exposed to as little potential for infection as possible.

Rad8 Pulse Ox settings

Let's face it, nobody has time to read the user manual anymore...especially when it's a very unexciting medical device. We did it for you, and found a few settings you need to be aware of since they impact your child.

Constipation issues can be quite serious, and as the parents of a child with SMA, you will probably face at some point.

Constipation can be difficult to diagnose because it's easy to lose track of the last BM you child had.  When the child becomes uncomfortable from constipation it is often mis-interprided as other problems.

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?