July 21, 2011


yesterday was parker's appointment with the surgeon down at BCCH in regards to his gall stones. we were hoping and praying that the surgeon would recommend a "wait and see" approach. PTL! that is the approach that he recommended.

the results of parker's ultrasound (from his ER admission) showed that parker has 3 large gall stones. one was lodged in a bile duct. however, there is no evidence of gall bladder disease or inflammation. that is a very good thing. the surgeon also noted that his symptoms were "atypical" for a gall bladder attack. strange. a lot of his symptoms were consistent with a gall bladder attack however his pain and symptoms persisted for 7 days. it is unusual for a typical gall bladder attack to last more than several hours.

but that's not to say that he didn't have a gall bladder attack.
he did say that kids often do present with atypical symptoms. however, he felt like he couldn't say with certainty one way or the other. therefore, a wait and see approach was a best choice for right now. additionally, parker has absolutely zero GB pain currently. obviously, if he has a return of his pain or symptoms, than we need to contact the surgeon immediately and get him to the hospital. if one of the stones were to block the common bile duct, he is at risk for pancreatitis or liver issues. but there is a large percentage of the population that lives with asymptomatic gall stones.

so we wait and see.

the surgeon had never, ever heard of the IV medication that parker has been on being the cause of the formation of gall stones. he was very skeptical of this. that's fine. i wasn't there to dispute his opinion or experience. just trying to communicate what may or may not be relevant to parker's condition. stone formation in the lyme patient is well documented in lyme literate literature. i felt that that was important for him to know. after all, parker's health history is no secret. he has a medical chart 6 inches thick. certainly, how lyme impacts his body is relevant. however, lyme, in general and his diagnosis of it, is not the issue at hand. not at all. i wasn't there to debate lyme or provide 'proof' of his diagnosis. nor did i want to. i'm not up to facing down that monster anymore.

unfortunately, the lyme becomes an issue every time. no matter how hard i try to deflect it, they latch on to it and pelt away. sometimes, it's in an outright hostile manner. other times, it is in how it was yesterday - an undertow of negativity, an undertone of skepticism, an undercurrent of derisiveness. subtle, yes, but indisputably there. i don't know how to explain it and i'm really not up to going into detail about this particular experience.

what i will say is this...
the surgeon was not outright rude...he was pleasant enough - but that underbelly of a dismissively doubtful and skeptical attitude was present. without a doubt, IT was there.
i also have no doubt that i am more sensitive to it. my psychological skin is thin. i believe that because of this my perception is slightly skewed. and just being at BCCH is a trigger point for my PTSD. absolutely, it is. and even if i'm not treated with outright disrespect, i'm still gonna bleed.

i was hoping that the subtle "questioning" of parker's LD and the dubious attitude was lost on parker. the surgeon had a good repoire with him. it is evident that he is good with kids. he explained how the gall bladder works and what happens in an attack really well. they talked a little bit about basketball (parker's number 1 passion). the surgeon told him if he did have to have surgery that he would actually be able to jump higher. that was cute and got a laugh from parker.

so i was very hopeful that the darker aspects of the appointment would be outshadowed by those lighter moments. i was hopeful, IT would have gone unnoticed by parker. i kept telling myself, 'shan, just let it slide off you like water off a duck's back. it's okay. it's okay. let their problem, be their problem. focus on the positive - after all, you've been given great news - no surgery right now!'

so i pasted a smile on my face, turned to parker and gave him a big hug and a celebratory "high five" for no surgery. his response was less than enthusiastic and he was quiet as we left the office. i just hoped that it was because he was tired.

no sooner were we out of the surgeon's office, when he just crumbled to the ground.

"what's wrong buddy?"
"i just feel really sad mom. really, really sad" he said, with tears in his eyes
"i dunno how to explain it, mom...it's just that it makes me feel so sad to keep hearing doctors say that they know nothing about lyme disease but then they act like they doubt my diagnosis. if i was a kid with cancer, and i had to see him (this surgeon) would he have kept asking what kind of proof we had to prove that i had cancer. would he act like he didn't believe i had it or act like my cancer doctors didn't know what they were doing?"

so. yeah. the skepticism was not at all lost on him.
that hurts. as soon as we got home and i could be alone, i cried.
i hurt for him.
it all washed over me afresh as i climbed into bed last nite.
i cried myself to sleep.

i hurt that he was subjected to this crap again.
at times like that i feel so helpless.

he deserves better.

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