Perception is bigger than we think in our Chronically ill kids

It’s amazing how perceptive and smart chronically ill kids become when dealing with their own health.  Tyler has always had a way of learning and remembering anything and everything that was said around him, about him, or to him regarding his medical care.  I was fascinated by his ability to commit to memory huge medical terms and lengthy orders of procedures.  This was especially fascinating to me when I considered that much simpler things like where his backpack goes, whose turn is it to feed the dog and did he put on underwear often slipped his mind.   But ask him about his allergies to medication and Tyler quickly recites a long list including both brand names and generic. Tyler remembers every doctor we have seen since he was five and can recite them in chronological order with fascinating details including specialty, appearance, helpfulness and bedside manor or lack of it.

 When visiting a specialist I would often look to Tyler when I forgot which medicine we started last week.  I knew without fail I could count on him to know the name of the medicine the amount he took and any problem side effects, like it made him dizzy and turned his urine purple.  Some doctors would chuckle at Tyler’s medical prowess “Wow you should grow up to be a doctor big guy.” One surmised after Tyler had given him his own complicated diagnosis of the problem.  He went on to say “Maybe you could become a geneticist and find a cure for this” After he had finished his examination and stepped out of the room. Tyler leaned quietly over to me and whispered “ So the new plan is for me to grow up become a geneticist and save myself?” Looking worried he added,  “ I’m thinking we should ask for our co-pay back.”  

Still other doctors saw Tyler’s focus on his own health care as a cause for concern.  “If he could just focus more on being a kid instead of all the medical stuff” was often the suggestion.  Of course, how had we missed it? His focus was his problem. Tyler please try harder to ignore the ambulance, your lack of oxygen and especially the blinding nauseating pain and focus on this very nice game of Parcheesi the child life specialist brought up just for you.  Don’t get me wrong; I think there should be a balance in every situation.  But what many of Tyler’s doctors often did not understand is that Tyler, while extremely knowledgeable about his situation, rarely spent time focused on it for the sake of worrying about it.  He learned that by learning and understanding and helping his doctors learn and understand he was empowering himself to worry less.

 When I asked Tyler how he could never remember to feed the dog but he never forgets when it comes to telling each nurse the exact rate at which each of his medicines needs to be injected.  He laughed and said, “ I guess because if I forget about the dog she is a little hungry.”  “If I forget to tell the nurse and she pushes it in too fast…I will feel like my chest is going to explode.” I realized, that chronically ill children often take such an interest and commit to memory so many things not because they are obsessed with their illness.  Rather because they are obsessed with avoiding pain and discomfort.
 Over the years Tyler has had his chest filled with fluid because his port was accessed wrong. He has had terrifying hallucinations for hours because someone forgot to read the allergies listed in his chart. He has been stuck with a needle 12 times before someone mentioned they were still in training to start an I.V. He has had nurses loose a half a pint of his blood on its way to the lab. Once for two days he felt as if his legs were being stung by thousands of bees. This was later attributed to the wrong dosage of pain medicine.  

For years Tyler was misdiagnosed and told by some, perhaps it was in his head. With the wrong diagnosis came the wrong treatment, which culminated in a nineteen-minute code blue.
 Needless to say, all of this has made Tyler a shrewder wiser patient.  His motto is trust but verify. Ask anyone who has been in the hospital or had a child in the hospital for any length of time.  Things like that sometimes happen. The longer you are in-patient and the more complicated your illness the more likely you are to experience a mistake or two.  Tyler has learned the hard way and sometimes the painful way that doctors and nurses, like the rest of us, are human and sometimes make mistakes.

The more he knows. The more he can positively affect the few things about his health he can control.  Over the years, I have talked with many other parents of chronically ill children whose kids face similar challenges. They echo that their children are frustrated when doctors don’t take their child’s interest in their own health seriously.  Even young children have an incredible innate self-preservation mode. It’s often more in tune and wiser than many in the health care field give them credit for.  For these kids they don’t have another choice.  Just focusing on something else doesn’t help.  Often empowering themselves does.  

Inevitably a doctor will enter Tyler’s hospital room after having read his name on the door wrong. Good morning “ Avery” he will say.  I have to chuckle a little when this happens and I read the look on Tyler’s face.  It says  “I ‘m keeping an eye on this one, he may not be the brightest bulb in the box.” O.K. but can you blame him?