This is what’s wrong with the health care system

This is not about obamacare crazies, so calm yourselves.  This is overall the problem with healthcare in this country and the fact that you as the patient have to be your own advocate / researcher. 
I like Doctors. I think they do a good job.  It is in my nature to defer to who I view as an authority on a subject.  So if a Dr. says to me I think we need to run some tests and rule some things out I say bring it on . 
Here’s the backstory.
My son as most of you know is about the size of a 9month old.  Not in height, just weight.  He’s a peanut …. skinny skinny.  He has been diagnosed with failure to thrive because he hasn’t been on the weight chart since he was about 6 months old.  We have been to a nutritionist.  Gotten some good tips and adjusted the way we feed him / what he eats.  It hasn’t mattered, he still doesn’t gain very much weight between appointments.
He is happy, healthy, energetic, developmentally on track and growing height wise again just not a lot of weight gain.
So we were told to go to a gastroenterologist .. say that five times fast.
And we do, sit through a two hour appointment and are told that we need to run some tests. Blood work and stool samples to rule some things out and we need to have a sweat test.  A sweat test is to test for Cystic Fibrosis.  Queue my holy shit freak out moment, my son could have what that could do what and kill him when??!! Once I got over that, I mean shoved it into the back of my head my husband and I talked about it and decided that we would rather know now if he has something like this than wait to find out that he is really sick when we could have been taking measures to improve his quality of life.
So we do the sweat test.  Mind you my son had 6 vials of blood drawn at the doctors days prior and was still pretty traumatized by the people in the white coats attempting to touch him.  The phlebotomists there are idiots by the way and did a terrible job needing multiple sticks in multiple arms, further adding to my general distaste for this entire thing.  But we go do the sweat test, which was relatively pain less but anxiety filled and time consuming.
Three days later when the Dr’s office decides to call me back after I called my pediatrician complaining that their lack of communication was unacceptable they tell me they didn’t get enough sweat for the sweat test and that it will have to be repeated. 
Ummm … no … I tell them. “I’m going to discuss it with my husband but I don’t know that I’m going to be repeating this test”. 
Nurse “You have to”,
Me “no I don’t have to do anything, we have no family history of Cystic Fibrosis, my son shows no other symptoms of the disease besides poor weight gain, which could be attributed to many other things.  If he didn’t sweat enough the first time, there is little reason to think he would sweat enough again.”
Nurse “the Dr. wants you to have this test done, you need to do it”
Me “I will discuss it with my husband, but I’m not sure I see the point”
Nurse “I need you to let us know either way”
Ok attitude I’ll keep you posted.

So onto Google I go searching symptoms of Cystic Fibrosis in Toddlers to determine if there is anything else that he may be exhibiting that could be contributed to this disease.  So when I do talk to my husband I can say here are the symptoms here is what is going on with him do we really feel its necessary to do this test again.  Which by the way if he tested positive with 1 sweat test it is standard practice to repeat the test just to make sure.  So we are looking at a total of three times doing this test minimum. 
Here’s what I find, Cystic Fibrosis is a genetically inherited disease .. knew that.  In order for you to have Cystic Fibrosis, both your parents have to be carriers, at which point you have a 25% of inheriting / having the disease.  You can find out if you are a carrier through a simple blood test. Grrr … so rather than putting my child through this test, we could have drawn my blood to determine if I was a carrier and if I’m not then there is no possible way my child can have CF.
So I call my primary, can I have this blood test done …random I know but is this something I can request.
Nurse at Primary “are you pregnant?”
Me “yes I am”
Nurse at Primary “How far along are you?”
Me “35 weeks”
Nurse at Primary “You should have already had that test, its standard prenatal care to test to see if you are a carrier of cystic fibrosis”
REALLY …
Call my OBGYN
Me “Am I carrier for Cystic Fibrosis”
Nurse at OBGYN “No you aren’t a carrier”

Crisis solved, question answered, all with a freaking couple of phone calls and Google.  So instead of putting my son through an unnecessary test that further added to his now general anxiety surrounding Doctor’s you are telling me that it is standard prenatal care to do this test and you guy you didn’t think to ask that?  The fact that I had a son tells me you could discern with your advanced degree that at some point I was pregnant.  And if that didn’t clue you in well I’m basically the size of a house right now so …..
Find out what they are testing for, ask whether or not there is another way, do not assume that they know best … I have never been the one to be so critical of Dr’s in general but this has left a taste in my mouth surrounding the health of my children from which I don’t know that I will recover.  I am disheartened and angered that I allowed this test to happen which a quick Google search and a couple of phone calls could tell me that I am not a carrier for Cystic Fibrosis so it is impossible for my children to have the disease.
This is what’s wrong with the health care system, there is no connection, no effort to find an easier way.  Just invasive costly tests its sad really ….