Monday, October 10, 2011

Trust - How to get your Mojo back after diagnosis

If you have read our youngest daughter's diagnosis story, you may wonder if I was ever able to trust a doctor again.


With a whole lot of research, questions, listening and reviewing.

Google is one of the best and worst tools for parents dealing with medical issues.  We've all done it... the middle of the night search using keywords like coughing, dehydration, sinus and the results that return back Malaria.   Quick call the pediatrician, the emergency room, the best friend who knows everything and Fox news!!!!!!!!

(insert rational thinking)

No, this is not Malaria.  We haven't left the state of Michigan, let alone the continental United States.  Pretty sure that search wasn't correct.

But google searches can be helpful.  It is after all, the way that I actually diagnosed our youngest daughter not once, but twice.  The first with type 1 diabetes.  The second time with an autoimmune hypothyroid disease called Hashimotos.

When searching for answers, if I am in doubt, I ask questions.  That old adage is that there is no stupid question, is actually correct.  Sometimes, I glean my best information when I just say, "I am sorry.  I know you do this everyday, but I really am new at this information.  Can you please explain it again?"  It allows the person you are dealing with to remember that you are a parent who really is trying to make good choices on behalf of their child.  99% of the time it works. 

With that remaining 1%, the other old adage is that you can't win them all. 

That being said, your hospital advocate becomes a great resource.  Maybe it is a social worker, a nurse, a friend in the biz, etc..  Speak up and ask for help.  Don't be shy. 

After asking those questions, it is important to listen.  Really listen.  The kind of active listening that means you take notes and write down what is being said.

With each 2-3 hour endocrinology appointment, I walk in prepared with a list of questions.  I give one copy to the nurse with our check-in paperwork and one copy stays with me.    In between each of the written questions, I leave a one-inch gap to use to record responses. 

Sometimes when I am listening, I have more questions to ask.  I try to be respectful and listen to the entire story, then ask my follow-ups.  Even if inwardly I am rolling my eyes because I know the response is incorrect, I still listen and then try to re-ask in another manner.

Don't give up.  When you are all done, review your answers to formulate a clear plan of action.  If you agree with it, give it a try.  If not, start all over with asking questions.

It seems simple, right?

The truth of the matter is that I didn't ask questions before our first diagnosis.  I made the appointments.  I followed the nurse like a good little Sheeple into the room and I let the doctor talk at me.  Then I gathered up my children, thanked the good doctor profusely and took my girls to the toy store to pick out a prize for being so well behaved, while I sorted through the overwelming (and often incorrect) information.

That made me guilty too.  Not for spoiling my girls, because I still have a soft spot for making our time in the doctors office fun, but for being passive.  I overlooked the subtle cues.  Our old pediatrician was nearing retirement and displayed every possible trait that proved that he no longer had the drive to help people.  Going into the office was just simply a rite of passage for his day.  Oozing off of his doctor jacket was the feeling that he had seen it all before and that he ultimately knew what was best - without listening to to his patients.  It intimidated me and sadly, I simply accepted it.

Maybe some of you are thinking that I must be a real treat in the office.  I am sure some doctors perceive me this way.  However, those aren't the doctors that I want on our team, caring for our children.  I would not trust them.

Trust is really what this is all about.  I know that mistakes will be made and some decisions will pan out and others won't.  It happens on every team.  What I do want is a common goal which is simple, to do what is best for our two daughters. 

It has taken a few years and some team members have been replaced since we originally started this journey.  If you read our oldest daughter's diagnosis, you might have caught on that we did indeed have a great team surrounding us.  By having caring, intelligent people that strive to do what was best for our older daughter, we were able to gently transition her into the world of type 1 diabetes.

Getting back to trust ultimately helped to get my Mojo back.  Oh, and the occasional search on Google.

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