Being A Patient Advocate - Mom Knows Best

Have you ever wondered what your child's medical chart says about YOU?

Does it drive you crazy when the doctor, nurses and therapists call you "Mom", instead of by your name? (or is that just me?)

I have quite a "reputation" among Austin's health care providers. Shocking! I know.

I am not sure how it all came about, if they each discovered this on their own or if there is a note in his medical chart somewhere, but I am known to be, and I quote, "on the ball". Over the past two years I have heard this said about me numerous times.

But that is a good thing, right? When you have a medically fragile child you need to be "on the ball", right? I am sure there are a LOT worse things than that. In fact, I know there are.

In some instances I am pretty sure "on the ball" = "difficult" to them. I prefer to think that I am well-informed, well-read and often just a teensy bit more knowledgeable on the subject at hand, which happens to be my child. They may know kidneys, blood pressure and how a muscle should work, but no one knows your child better than good ol' "Mom".

Looking back, my reputation may have started as early as Day 3 of Austin's life. I recall having an ever so...erm, polite exchange with a Pediatrician about an immunization. I declined it and she felt it was her job to tell me what a bad and uniformed parent I was. I knew my Patients Rights,and I exercised them. End of story. She is not the only health care professional I have fired, I just cut my teeth on her. Is that "on the ball" or difficult?

I remember when she left my hospital room, my mom was shocked 'Did you just argue with the doctor?' Yup! I sure did. If you try to brush me off, belittle my concerns, treat my child badly, provide negligent care or just plain ignore him. Guess what, then I can become difficult. Otherwise, yup you can call me "on the ball". Secretly, I kinda like it.

So what makes me so "on the ball" you ask? Just taking a guess here, but it may be one or more of several things:

• I call to follow-up on tests
• I ask for a copies of reports for my records
• I ask questions about possible alternative treatments
• I offer suggestions {gasp!}

Basically, I just look out for Austin's medical interests and I try not to get blinded by ego; mine or theirs. When it comes to Austin's medical treatment I intend to be seen and heard and whenever possible I like to participate in the discussion. I am his patient advocate

Obviously if I had all the medical answers I wouldn't need them. Trying to keep up to date on relevant studies or reviewing tests doesn't give me all the answers, not even close. I realize I need their expertise and experience to help guide the best course of treatment. I am constantly reminding myself, "No one can whistle a symphony. It takes a whole orchestra to play it." {H.E. Luccock}

Being your child's advocate does not mean being combative, not at all. Parents should be able to work cooperatively with a medical team. I would not suggest going into an appointment waiting to pounce on a doctor or disregard them, merely be prepared with your own questions. Unfortunately, it appears that some health care professionals are not used to a parent working that way.

I wonder how many other parents are considered difficult, erm...I mean, "on the ball". Have you clashed with a doctor on your child's care?



Thanks for peeking,