The Mathews

The Mathews

Monday, July 2, 2012

Going Against the Grain

One Step at a Time

 If no one questioned another's way of thinking, would sufficient be okay?   

A control freak would probably best define or describe me - somehow challenging authority has always been an integral part of me, and usually it does come with logic and peaceful reassurance in the long run. When challenged with lack of control of Andy's SB, I steered this "need" towards his doctors and specialists (lucky them), and it has been extremely interesting to see how they handle it. After the first "ego blow" that someone might be questioning their all-knowing opinions, most have realized that Tom & I are truly looking out for Andy & Robby's best interests.

Place yourself in a tiny little cubical that the doctors refer to as an examining room.   Although a pediatric specialty, there is little to no color in the room and it lacks any type of toy what-so-ever.   Bored of waiting (even at the first appointment of the day) and done with the bag of toys you armed yourself with, Robby has created a new game of island hopping (jumping on and off of the examining table).  The "specialist" arrives and obviously hasn't reviewed your son's case folder.   Here is one example of dialogue that takes place as they attempt to tell you that Robby now needs a CPAP machine (a machine that blows air into your nose and face causing your lungs and air passage way to open).
"You really want to put a mask on him while he is awake? And, you realize our goal is to get him to fall asleep and stay asleep? And if he rips it off his face and flings it across the room, you really think he's going to let me put it back on? Have you ever met my son (even though he was in the same exam room as us)? No, his name is Robby - not Matt. Yes, he is four, but his strength, will-power, vocabulary, and stubbornness would put mine to shame. Yes, I realize that I am the parent, but somehow arguing for hours into the night, repeatedly throughout the night, does not seem like a logical way to support going to bed peacefully and sleeping through the night. Is this machine a necessity or are you just attempting the next thing on your list of ideas?  May I see his sleep study results?  Oh, that's okay, I don't need a paper copy right now, how about looking it up on the computer you have right here in the room.   Could you provide my pediatrician with an annotated version then please; I'll refer to her before we proceed."

 Needless to say after three different conversations, we will no longer be visiting this pulmonary specialist assistant, and Robby isn't wearing the gas mask CPAP device. Luckily his amazing pediatrician has requested a new specialist for him. We'll see where this one goes.

 I've also noticed that the doctors tend to lose all facial expression and tone when you question them. April brought warm weather and infections to our household. My 6th sinus infection since January, ear infections, sinus infections, and two UTI's for Andy found us in the doctor's office more than out of it. Andy's urologist deemed these infections as a sealed fate for cathing. Concerned that future UTI's would damage his bladder or kidney function, he thought cathing him would prevent such events from occurring. The only problem is that each time a catheter is used, it introduces bacteria that could start a UTI. So to get this straight, we are cathing Andy every 4 hours to prevent a UTI, but in doing so we are promoting a UTI every 4 hours in the process. Doesn't this seem idiotic? We thought so, so we aren't. We'll wait until Andy gets another infection if he ever does and reevaluate then.

 Too often I have listened to the doctors use generalizations about my kids: he'll grow out of his ear infections (he didn't), he won't have any lower leg movement (he does), he won't be able to bear weight or walk (no, he runs), he'll need to attend a special needs classroom (don't even get me started on that phone conversation which was completely against the law on their side to say), etc. In each case they have been wrong. Because of this I won't allow my kids to be grouped into a "typical" stereotype. We'll continue to go against the grain as much as necessary. Besides, being like everyone else would just be boring.

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