Stick a Fork in Me

              Well.  It has been long week in Feistopia (Pantsadu? United State of Feist? First Feistypeoples Republic?  I'll stop now.) Feisty Pants had the first stage of a two stage spinal surgery for her severe scoliosis.  She's had her back split open from stem to stern and screws put in. She had a halo traction device screwed into her skull. She had a central iv line, drainage tube, and four iv's put into her "I'm not short, I'm fun sized" sized body.  She has staples from her cute little tush to her neck. She has fifteen pounds of sandbags on a pulley system hanging from her halo. She looks like an oh so adorable steampunk version of Frankenstein's monster.   Thankfully, she was intubated and sedated for the first four days so she didn't have to truly feel most of it.   She is doing remarkably well, considering.  No signs of infection (hallelujah), vent is out, and she is propped up in her (now rebuilt) wheelchair.  She only pulled two of the iv's.  FP is off the heroin (fentynyl) and down to heroin lite (oxy) She even made it out of the PICU (at least until Monday). 

                Monday we start all over again. The second stage will involve cutting out pieces of bone and dropping in rods to straighten her as much as possible.  The halo will be removed. Feisty Pants will again be intubated and sedated at first.  Once her lungs are recovered enough from the second shock to her system the hard work will begin.  Therapy.  Treatments for keeping her lungs optimized. Pain killers to be eventually weaned.  A body that doesn't really understand why it's being mistreated so.  A mind and spirit that just knows it has to knuckle down and gut it out one more damn time to merely keep going. And in the meanwhile, her father and I sit here watching her, vacillating between patting ourselves on the back for making it finally happen and wondering how awful we are for causing her so much physical pain. 

                 We were lucky to get her into Shriners.  This the tenth hospital we have taken her to. (I think.) It's fabulous and I am impressed almost beyond words.  And I'm waaaaay too jaded to be easily impressed with the healthcare industry in general.  But while we sit here counting hours, days, and major milestones for my oh so vulnerable, oh so beautiful youngest child,  our supposed leaders want to take her health care.   They don't even have the decency to call it what is.  A DEATH SENTENCE FOR DISABLED PEOPLE LIKE MY CHILD.   You bastards want to gut healthcare for the disabled. Make no mistake.  That's EXACTLY what is meant by lifetime caps on Medicaid.  They want to allow the disabled to suffer and possibly die to make rich people richer.  At the very least that is depraved indifference to human life which is the statutory definition of murder in the second degree. I pray to any and all deities that horribly monstrous idea dies the ignoble death it truly deserves. But if it doesn't, I pray that the first family who has to mourn and grieve because of Congress's hubris and greed sues the living shit out every single Congressperson who voted for this criminal act personally in a huge wrongful death suit.

               How dare they assume some rich person's money deserves more respect and care than our families, our loved ones, our children? How fucking dare they!?!?!