Perky for PERCS

PERCS- that is what the surgery our Maxie is having tomorrow is called.  Apparently the name no longer has anything to do with the actual procedure and harkens back to the early days of experimenting on and torturing little children with CP.  It used to be a very major surgery that has miraculously become what they call “same day surgery” meaning that they still experiment on and torture little children with CP but without so much as a lollipop as they kick you out the door.  I won’t bore you with the science but I will bore you with my tales.

I swore, years ago, that we would never cut Max.  He was too perfect, too strong, too functional and didn’t need to be “fixed.”  His brain was damaged, nothing can change it and he will learn to do what he needs to do and can keep progressing.  Fast forward to tonight and I am remembering that promise to myself and to him and feel like a cheater.  After months of exploration, years of reading, 60 Minute-style interviewing of any parent I could find who did it, and a cold hard look at the facts, I flip-flopped.  I did most of my flip-flopping ( in flip-flops) this summer as I absorbed the realities and limitations of his progress.  I went full speed ahead, marched back into Dr. Nuzzo’s office, five years after I stormed out his very same office declaring that he was nuts and that I would never do this surgery.  With a bit of tail between my legs,  I declared that we wanted PERCS. Once he proclaimed that Max was an excellent candidate- one of the best he has ever seen – and that had a future likelihood of walking independently – I signed him up as quickly as if it were a Mommy and Me class.

I have fantasized about best case scenarios, discussed them with strangers, and planned our course of action.  I have called our insurance companies ( yes, more than one) and am on a first name basis with our claim reps to ensure that this very expensive “same day surgery” will be covered completely.  I have emailed and chatted up the doctor’s staff so that they know who we are and will answer our calls in the middle of the night.  I have cleaned out the therapy room, ordered some ridiculously expensive equipment from the one person who makes what I need and am having it shipped from Washington state.  I have organized therapy and arranged for a conductor from Hungary to come here to work with Max.  I have spoken to his teachers and his aide and his principal ten thousand times. I even had a conversation with the transportation office about him not riding the bus for a few days.  I saved my 15% off coupons at Children’s Place to buy pants that will fit over the casts he will wear for a month and tonight I went to Back to School Night with dark circles under my eyes and a glassy expression that hid the tears I felt like shedding.

The procedure is safe and quick, but it is still not fair.  My son fell asleep after crying for a long time about how scared he was and asked a million times how much it will hurt.  He doesn’t deserve that. It may be the right thing to do, it could change his life, but it kind of sucks anyway.

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7 Responses to Perky for PERCS

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  7. Lori Poliski says:

    Our son just had SPML by Dr. Yngve in Texas for his spastic diplegia. Post op – 4 days. While he is napping, I am doing research on kids’ progress post PERCS/SPML. I take it that it wasn’t successful. If you could share your experience with me via email, I would appreciate it.

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