Saturday, June 30, 2012

Stretch it like a rubberband..

Fishing Pole went into surgery yesterday as he always does.  Head held high and flirting with the nurses.  Lumpy & Puppy accompanied him, we decided that this surgery needed more than just one animal friend.

I am always amazed at his resilience..

We counted yesterday and this was surgery # 9.   (1. heart defect repairs, 2. bronchoscopy, 3. pacemaker, 4. pacemaker repair, 5. pacemaker repair..again, 6. endoscopy, 7. adenoids, 8. Weenie surgery, 9.Spine surgery)

NINE in 6yrs and almost 4months..


It's incredible to imagine isn't it?  That's not even all the hospitalizations because he's had several hospitalizations for observation, the weird wire swallowing incident, and things like that.

Yet he's always a trooper.. He doesn't seem to mind too much and always just says "Well , they will fix me at Riley".

Momma, is not quite such the trooper.  I'm used to this routine by this point but the stress gets to me.  Watching him wheel (or for the last 2 surgeries-WALK) away into the OR is still just as scary as it was the first time when he was 3months old.

I'm ready to be done.  Let's not find anything new that might need fixed, okay/??  I know , I know.. Tonsils are coming up in less than a month (3 surgeries over his summer break-- talk about a craptastic vacation) and his pacemaker battery is quickly depleting.. But other than those planned ones- Nothing else, okay?   I'm feeling run down.   I need a break from the stress..  I need to whine for a bit.  Life as a mom to special needs came be rough sometimes.  It's times like this that I wish I could yell at his biological mom. I wish I could shake her til her tiny brain rattles and make her realize the damage she did to these boys because she couldn't give up her drugs . Not even while she was pregnant.  But I know it wouldn't do any good.. She wrote Fishing Pole off the minute he had his first surgery & got his first scar.. He wasn't "perfect" anymore.  So I doubt she could care less that he's had all these other surgeries. She's never showed an interest. It breaks my heart and makes me beyond furious at the same time.

Regardless of all that, we move on.  We continue to march forward and face whatever knew challenges might be thrown at us (and Lord only knows what they'll be.. because Fishing Pole, he likes to be rare!) because that's what you do as PARENTS.

Surgery went well yesterday. We got a very late start due to the surgery prior to us going over quite a bit. But everything came well and I can honestly say that his surgeon?  my new favorite dr in the world.  She is beyond awesome.  Everything from her bedside manner (she even goes with him to recovery until he's all settled in) to her ability to explain things easily and to take her time if you want to know more.  After the surgery, we sat down to talk with her about how it went.   We went into this surgery as a "maybe" fix.  Due to the pacemaker, FP can't have an MRI and the CT didn't show a lot to go on.. So we made the decision to risk the surgery based on his symptoms alone. Luckily it was a good decision to make!  She went in and found that he did not have a "functional tether" as she had assumed based on the CT but a full anatomical tether that had the spinal cord stretched VERY tight.  As soon as she clipped the filum, it snapped back up to where it should be like a rubberband.

I admit that when she said that I said YAY!!  I was so glad that we didn't go thru all this for nothing. I was glad that there was a reason and that hopefully this will fix his incontinence issues & leg pains.

Since then, the boy has been laying flat in a bed - a feat that I thought would be impossible to accomplish, he had done without much complaint at all.  Of course valium does wonders :)  After spending the nite on the heart floor (boy was he mad) to appease his heart dr, we have now moved up to the neurological floor in the NEW tower and Ohh la la.. what a room.  A HUGE big screen tv is positioned right in front of his bed.  Every room has it's own Wii (which is is now playing).  A pull out comfy recliner next to his bed is a blessing because those hard chairs were killing me yesterday.  On the "parents" side of the room, we have our own tv, a desk & the pull out couch.  And of course a private bathroom.

Due to superboy being spectacular in his healing abilities (it must be his super power), we are ahead of schedule and might get out a day early!  Yay :)


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