4th Birthday Photo Session

4th Birthday Photo Session

Thursday, May 16, 2019

Surgery #11 ... but who's counting?

This morning marks yet another sarcastic celebration, surgery #11.  Oh yeah, cuz when I was pregnant, I just couldn't wait to hand over my kid to not just the surgeon, but the anesthesiologist, eleven separate times.  Oh yeah, it's every parent's dream come true.

Sarcasm aside, I've been awake well before the rooster.  Not out of fear, but the horrid kink in my neck.  Must have been that 15 minutes of working-out I did two whole days ago.  Won't be doing THAT again anytime soon.  *kidding!*  But yeah, surgery days tend to conjure all the emotions and fears that parents like me choke down day after day, stifle with food & beverage, or keep at bay with a series of bad jokes.  Ok, not all the jokes are bad -- but, whatever.  We all have our ways of coping. 

Last night, I stole this picture from someone on Facebook. 

Reading this really resonated with me and our experience.  In fact, I believe I wrote about it in this blog.  Yes, third post in August 2010:  http://amazingandi.blogspot.com/2010/08/kaiser-permanente-rent-baby-program.html  
This is so true.  The real work started when I got home because I had no help.  I had to learn how to place the OG tube, (tube that went down her mouth directly into her stomach -- every 2.5 - 3 hours)... I had to learn how to push her medicines through the OG tube, and later, the G-Tube.  How to take care of a leaking g-tube site.  How to know when her breathing was too fast or too labored - because her diuretic dosages were off.  I remember one of our first days home alone from the hospital like it was yesterday.  Her breathing seemed more labored, and I didn't yet know, nor trust, my gut -- my parent's intuition.  I remember waiting until a respectable hour, either 6 or 7 a.m. to page her pediatrician -- who told me to call day or night, but... I was trying to be considerate... little did I know he was probably already at the hospital making rounds to check on the kids he saw.  When I got him on the phone he said, 'without a doubt, if you suspect something is different... please take her to the ER.  Now.'  So - that we did.  Turns out her diuretic dose was off.  It was a constant battle of "too wet" or "too dry" -- the diuretics helping with the battle between her heart defect, and the pressure that was putting on her lungs.  Blue blood -vs- red blood.  Oh my -- I do not miss those days.
In any case, the picture above speaks volumes to me. The NICU was the easy part.  The rest of the year, was easily the toughest year I've ever endured.  Fast forward to almost our ninth year here... and Andi is thriving.  She's been discharged from PT at school, reduced to a 1/2 hour a month "consult" of OT at school. We had her evaluated for outside OT therapy this week and they deemed her not needing this service anymore.  We've graduated, and writing that fills my throat with emotion that I choke down.  We have been in some sort of therapy since October 2010.  Yes, her early intervention started when she was home from the hospital - post heart surgery.   In two weeks, her Medicaid coverage through the Katie Beckett Deeming Waiver - (secondary insurance that covered easily $1200. a month of therapy services) - will cease to cover her, because she no longer receives 5 hours of therapy services a week.  To all the people that don't want to support social service programs, state provided assistance -- kids like Andi are the gleaming beacon of light that programs like this help.  It's because of the past four years of outside of school services she has been afforded through this program, that helped get her here.  There were many hands at work to help Andi get to where she is.  I often hear, it's because of you - and what great parents you are... and I beg to differ...  I mean, yeah, I'm fabulous and all *insert Cher hair toss here*, but it's really the many hands that have helped guide, steer, strengthen, invested, and taught Andi -- that have got her to this level.  In addition to the Princess herself -- she herself has made it all of it happen.  Without her work, perseverance, strength and downright stubbornness -- none of the others would have such an effect.  So, I yet again say thank you to the many hands that have helped lead us here.  And, to the Georgia Katie Beckett Deeming Waiver program, I say, "thank you, but you are no longer needed!"  Honestly, without that program, Andi would not have had 3 hours of therapy a week to help propel her to her current level of awesomeness.  

So, back to today... surgery #11.  A fairly "minor procedure" but none-the-less, a procedure.  We are going in to have the abutments attached to her BAHA posts.  So, end of November last year, her ENT surgeon, Dr. Torino, put the screws/posts into her skull, behind both ears.  We've waited the 6 months to put in the second part - which is the abutment.  The 'snap' that will stick out of her head - so she can attach her processors to, once the skin heals.  So, when we get there (a few weeks) -- she will lose the ugly tan headband that her processors attach to - and she'll start connecting those directly to her skull. It is likely that her hearing at the higher octaves will improve, due to the direct connection.  Being a girl, she'll easily be able to hide her processors under her hair.  Hopefully, technology will continue to advance, and those processors will grow smaller and smaller.  The process of today's surgery is that she will be put under, and Dr. Torino will press on her skull firmly to locate the posts. Once she determines best location, she will basically take something like a paper hole punch (but for the skin) and open the area to access the post, and screw in the abutment.  Ooh, you're not eating ... are you?!  Sorry - I'm numb to all this shizzle.  She won't be able to wash her hair for a few days, and won't be able to put her head under water in the pool for a few weeks - while we let the skin heal around the abutments. 

So... it's a quick, "minor" procedure - because putting the posts in was the tough part of BAHA (bone-anchored hearing aid)... but, it is still a surgery.   So, put out your good vibes for our lil' Andi Bean - and let's all energize this to remain 'a minor procedure.'  

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