Tuesday, August 1, 2017

What We Did on our Summer Vacation

                 Well now, it's been long slog through a hot, sticky summer, hasn't it?   Spent a million hours worrying and a million more being grateful. Straightened out a kid. LITERALLY.   Almost lost, but then didn't,  my child's healthcare and future.  (THANK YOU RESISTANCE)  Had it rain inside my house. Almost broke the nurse. (ahhhhhhhhh)  But we have made it through.  Summer's almost over and I'm feeling more grateful and relieved than I thought would be possible. 
                So, thank you to Shriner's Children's Hospital  You really do perform miracles.  Thank you to the surgeons and nurses and therapists and social workers.   You were amazing.  Thank you to Hot Pants, nurse extraordinaire.  Your skill and dedication is amazing.  Thank you friends and family who were patient and understanding when we were sleep deprived and forgetting to call.  Thank you to our house insurance for agreeing that it should not be raining inside and covering it quickly.  Thank you Hippie Pants and company for keeping my house together and the zoo alive whilst we were gone.
                And since you are probably wondering what on earth "literally straightening our kid" means, here ya go:

Before:
First Procedure:



Second Procedure:


After :


It's been long. It's been exhausting.  It's been amazing.  And I am so very grateful.

Sunday, July 23, 2017

There and Back Again

            Well now, it's been a million years since I posted. Or three weeks, whatevs.  We are finally home from the great hospital expedition of 2017.  Robokid is healing up nicely, barring a mild thrush infection from all the antibiotics.  I do wish we were managing her pain better but opioids are out - depresses her breathing, as are nsaids -will affect how her hardware/spine heal and bond together.  We are stuck with tylenol and distraction for the time being.  For the most part it's alright.  Feisty Pants is feisty as hell and tough as nails.  But from around 6pm to 7pm every night, she sobs.   We are not quite sure why.   My guess is pain but it could be pain plus fatigue or even just the emotional effects of having, as the surgeon put it, her entire nervous system tinkered with.   So her father and I, along with her nurse, second guess ourselves, hold her hands, and feel like horrible human beings.   Until about 7pm, when she magically stops and the Universe becomes wonderful (or at least, normal) again.
             Other than that, it's just really weird coming home from a long hospital stay.  Feisty Pants has had so many and they never seem to change.  Your world is turned topsy turvy, often with no notice and breakneck speed.  Then the day to day hospital life becomes it's own weird little routine.  Then you are shoved back home.  It's like coming home from war or waking up from a coma.  (I'm at least half right there.) The world is exactly the same but yet for you and yours, it isn't.  The house looks the same.  The world is the same.  But you somehow are different and yet you need to find a way to fit yourself back into your old life as if putting on a pair of old, comfy shoes.
               In an odd way, it's a little comforting that my house tends to a little chaotic.  I may be bitching and screaming and kicking as I put my house back together, and unpack, and shoo out the various lunatics (two legged and four), and catch up on three weeks worth of laundry. I am definitely bitching as I try desperately to catch up on paperwork and make doctor's appointments and get even more paperwork now made necessary by FP's surgery/hospital stay/shaman treatment/exorcism.  But it all gives me a way to slowly catch up with myself psychologically until I start to see light at the end of the tunnel, and realize we are truly home at last.  
             

              

Tuesday, July 4, 2017

The Language of Healing

                     Well,  now we are on our third week in Shriner's.  The surgeries are done.  The rods and screws are in. Robokid is doing pretty well considering she was bisected and rebuilt. Twice. She looks fabulous with a capital FAB.  Before she looked like Richard III straight of the Shakespeare play. Now she looks about Richard III in real life.  The breathing tube is out.  For the second time.   She has been moved out of the PICU.  For the second time.   Weaned her down from heroin to heroin lite. Weaned her down from two iv antibiotics to one oral one. (Oral being loosely defined as whatever we can shoot into Feisty Pants' g-tube.). All in all, it's been pretty smooth sailing.  
                      So, now we come to the actual hard part.  The physical therapy.  The respiratory therapies designed to get her lungs back on track after two major surgeries in eight days. The part where she is sore and cranky and mad at us for doing this to her.  The somewhat boring, really hard work of healing and rehab. The hospital staff now has the unenviable task of teaching Feisty Pants to not throw herself out/off of things that are annoying her.  And of teaching her cranky parents not to break her.   But while we doing all this relearning of how to best manhandle Robokid, I've noticed I'm slowly picking up on the medical lingo and thought I would pass some of it along.
Doctor lingo-
What they say:                                                   What it means:
I'm a little concerned about....                            This is freaking me right the eff out...
I'd like to explain....                                            Hear my wisdom, Mortal.
You have to understand....                                   but you won't, idiot.
Nurse, where did you put (insert item here).      Nurse, I lost (item) again.
Nurse, I've charted that on the computer.            See, I didn't forget! This time.

Nurse lingo-
What they say:                                                    What it means:
Dr, when did you want me start (procedure)?     Moron, we need to do it now. Right now.
Well, that's just our Dr. So-and-so.                      Who has the social skills of baboon.
Well, now that's interesting.                                 How the eff did you manage that!?!?
Ok, dr., I'll get right on that.                                 Get out of the way so I can it done.
Hmmmmm....                                                Freak out now. Right now.

                    Now, if I can just figure what the hell is meant by the sign in the bathroom telling people not to throw away "bowel programs" in the trash.  

Tuesday, June 27, 2017

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.

Saturday, June 24, 2017

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!?!?!    

Sunday, June 18, 2017

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. 

Tuesday, May 16, 2017

In which Feisty Pants is not horrified by the Universe

                So Feisty Pants has had a horrible, awful, no good week.  Just ask her.  It all started last Thursday when she had to go for yet another sleep study.   Somewhere. some poor med student must be getting a PH.D. in Feisty Pants' sleep habits, she has been studied that much.   They really are absurd on the face of them. Take a kid who may not sleep well, glue leads and wires all over them, stuff a Bane like mask over their face, take them totally out of any version of their comfort zone and then watch from another room to "help" them.   I don't know about other kids, but my feisty one has seen this movie on Syfy a thousand times over and it never ends well.  So, yeah, she's really gonna sleep.
              And in order to get her to cooperate at all (Read that as no punching.) we have to bribe her.   With a shopping excursion as soon as it was over.  So no sleep the next morning either.   I don't care how many chocolate chip muffins and minion fries and lip balm you come home with.  Her sleep schedule is now all blown to hell and good luck getting her back on track.  Now mix in a sinus headache because it is raining pollen here. And hormones because she is fourteen.   And total appalled embarrassment because she has (gasp,  shudder) parents.  Two of them.  And they insist on talking to her public.   I don't know how she copes with it.  She's a saint, that one.
             But today, the stars have aligned and miracles have occurred.  The great Unicorn in the sky has smiled down upon her.  She got her ipad.  (This is a HUGE deal to a kid with garbled speech and she knows it)  The case came in BLUE too.  Her favorite color. And her miserable embarrassments, um er, I mean parents took her to the pet store as promised.  She didn't bite anyone at the sleep study either so she got four goldfish.  Whereupon she promptly named them John, Paul, George, and Ringo.   I was surprised and delighted by her choice. I asked if she knew who the Beatles were. "Yeah," she replied. "Hey Dude!"  I don't know if she heard the song wrong or just cannot pronounce Jude, but whatevs.  I'll take it.   Happy kid.  Happy Mom.  You'll have to excuse us as we ride off into the sunset.   Na na na na na na na na na Hey Dude.....
 

PS- Still looking for anyone who wants to share caregiver stories with a great advocacy organization.  Drop me a line if you're interested.