Thursday, January 8, 2015

I am THAT mom

Long, long ago, like 21 months ago, I never questioned doctors.  Clearly they know more than I do and I pay them to know more.  When nurses called and said that all test results were normal, I didn't question it.  I never once considered ordering the lab results myself so I could see the actual values.

If a doctor said jump, I jumped.  If a doctor said don't bother, I didn't.

It never occurred to me that the doctors might not always be experts.

But then there was Cade.  Even though I was a mother before him, he changed everything.   I needed to know all that I could about my little boy.  And I was given the advice by a former SSI judge to obtain every scrap of medical records.

The two created a new me.

After Cade, I've learned to question everything.  Not because I don't trust our doctors.  I do.  I trust them implicitly.  But I've also discovered that a special needs mama is an absolute expert on her child and often, her child's condition.  

At first, getting his medical records was fascinating.  Reading the doctors' notes was like sneaking into the back room and eavesdropping.  It was a novelty sorting through test results with their endless acronyms and numbers.

The more I learned, the more I wanted to know.   WHY was his white count often low?  Why is his alkaline phosphatase over 1000 when the range is less than 300?  What are these petechiae all over his body?  (yes, I can even spell it now!)  (And no, he doesn't have leukemia.  Whew!)

And the more I knew, the more I knew, if you know what I mean. 

I now know that Cade's ear canals are too tiny to see into, but you'll have your best chance in the left ear.

Drawing blood from a vein is easiest in his left inner ankle, but I have to get a doctor's order to draw from that location.

He eats 750-800 calories most days.  300 on days when he doesn't feel like eating, 950 on days during growth spurts.

I've had more than one doctor laugh (in a good way) and tell me that I really know my kid.  I've had others that thank me for making their job a little easier.  And I've had some that blow me off and check the right ear, even though it's fruitless and Cade hates it.

We've had mostly wonderful doctors, but sometimes their notes are inaccurate. I've realized...they're human.  Sometimes they make mistakes.  Sometimes they don't know everything. 

With all that I've learned about Cade, I've learned more about doctors and the industry of medicine.  And how important it is to speak up and be an advocate.

Last lab draw, the doctor handed me the lab orders.  I shuffled through them and realized 2 were missing.  He left to go print them, and while he was gone I counted through them again, ticking them off in my head.  Two more were missing.  I only caught the error because I knew what needed to be ordered and I knew what all of the labs were for.  The doctor was very happy to go print the others and I was happy knowing I'd saved Cade from having to return to the lab for another poke.


Cade's Care Notebook helps me keep everything straight.

It's been an interesting journey, becoming a medical advocate.  But the love for my son makes every phone call worth it.  He's my Cade!







2 comments:

  1. We have to be "that mom" for sure! I've been a nurse for seven years now, and I always knew that moms knew their kids with special needs best, but I never got it until now. We do know them best. I always have to tell Cam's docs, "You're going to think I'm crazy, but this is what I want or think". They always laugh at me they but do it and listen!

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    1. I didn't know you were a nurse! That must be helpful with Cam. Even when our kiddos don't have serious medical issues, it seems like something is always looming on the horizon that COULD be serious.

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