Two Parts of a Whole

                Another bloody Monday.  Literally.  Today was stage two of Feisty Pants' scoli surgery.  They removed a wedge of bone (L1), straightened her pelvis as much as possible, dropped in the rods.   They say it went well.  They noticed a slight tear in the dura which they fixed but that may mean her drainage tubes will need to stay longer this time.  They removed the halo so that will be a relief once she wakes.  She is intubated still.  They probably won't be in a hurry to remove the tube. She is back in the PICU already.  We are just waiting for them to come get us a bring us back to her. 

                The above paragraph doesn't seem like it's long enough to describe the day.  I got up four frigging thirty this morning.  I've been sitting here basically waiting since five frigging thirty.  I've gotten coffee.  Ate lunch.  Argued superhero trivia with Goo.  Did my yoga on the floor of a hospital room.  Checked my email. Found a view of, then argued with Goo about Eastern Pen. (Eastern State Penitentiary, an allegedly haunted prison)  Did all those little piddly things one does when waiting for time to pass. Time is not passing fast enough today. This last half an hour has taken at least a year. (It has too.  And that did make sense. You don't know. Shut up). It's only four pm.

                  Hospitals have such a weird aura.  One half knuckle dragging, nerve biting, adrenaline fueled roller coaster.  One half serene, ancient temple of healing. We just left the waiting room and now are sitting in Feisty Pants' room in the PICU. Straight from jumping at every approaching human looking vaguely medical to quietly enjoying watching her sleep.   The halo is off without any mean looking battle scars like we had envisioned.  Just a few little circles.  I'm gonna have to work hard to spin this into her "the girl who lived" story.  (I know! The scoliosis itself will be the lightning bolt shape. Feisty Pants and the Prisoner of Insurance Regulations here we come!) Her spine is still a meandering path but so much better than it was.  It will never get straighter.  But more importantly, it will never get worse. 

                    And now comes the hard part.  The uphill climb of healing.  Of therapies.  Of pain and struggle.  Of the "why is this so damn unfair"ness of it all.  (I cannot even complain when she hits that stage.  FP has damn well earned it. ) But that will start in a few days.  Right now we catch our breath.  Right now we relish the feeling of gratitude. Right now we sit and watch the miracle of Feisty Pants sleeping peacefully.

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!?!?!    

In which Feisty Pants is not worried at all

               So, it's been a few weeks since I have posted.   Sigh. I tried. I really did. (Shut up. I did too. You don't know.)   Feisty Pants and I researched fun diy gifts for Father's Day. Okay, so I did tell her they would also make boyfriend gifts, but hey, that's just creative motivation.  We also looked up homemade healthy popsicle recipes seeing as how we all live in the first level of Hades now.   We even looked up info on why and how pets are so amazingly good for us in general, and special needs kids in particular.   I am hoping this will turn into amazing future posts because I sure as hell didn't get them written these last few weeks. 

               As I write this, we are sitting in Shriners Children's Hospital in Philly.  Feisty Pants is at this moment getting x-rayed.  She will having the first stage of a two stage surgery tomorrow for a severe scoliosis. We have had a crazy last month.  Clearances from some docs.  Other doctors who wanted to "check on her one last time before the surgery".  Tests to run.   Blood to be drawn, some of it even hers.  (Notice that we do not call her Complacent Pants.) Shopping for everything we will need while staying here.  Shopping for everything needed while Hippie Pants is staying at our 
t place. A million people stopping by to see her.  A million explanations on why I am spraying them with purell.  And to top it it all off, Feisty Pants is not nervous at ALL, nope, nuh uh. She simply doesn't feel like sleeping this week. That's all. So apparently we don't want to sleep either. 

                But the crazy ride of the last few weeks is over.  We made the drive down to Philly with no problems.  We snagged a room at the Ronald McDonald House so that's one worry we don't have to own.  Admission went through with no problems.  Now we just wait.  And watch Feisty Pants worry. No wait, we will watch FP not worry at all.  She just likes sitting around giving everyone the patented Feisty Pants side eye and not sleeping.  Besides, Hot Pants, her nurse from home, has come down to hold her hand and make her feel brave -not that she needs it at all. And this hospital has the science channel and the game show network, so she knows how she'll be passing her time not being nervous at all.  I guess her father and I will be the only ones in the room who are worried.