Remember when I posted about Bentley?  She is the little girl who had a heart issue similar to Ky’s.  Bentley had Tetralogy of Fallot.  Kyleigh had a duke’s mixture of sorts of AV Canal and Tetralogy of Fallot.  Basically Ky’s heart was just REALLY a mess and they had no real term to call it.  So they struggled with making a diagnosis… at any rate…

Bentley came through her surgery with FLYING colors.  She had surgery on Wednesday, was off pain meds by Friday and was released to a hotel on Tuesday!  They even think she will go HOME HOME on Friday!!!!!!!!  What a miracle!!!  God certainly answered prayers there!

I have to say it brings me to tears (for many reasons).  I am so SO thankful that their family did not have to go down the road we went down…. but then again I look back and think… wow.  We were so “young” in this whole medical thing we had NO idea what to expect.  Other than my gut feeling that we were going to be there longer than the normal 3-4 days… we had nothing else to go on.  We barely even had those “fight” for her instincts.  We had no idea how to express ourselves or how to get our point across.  We had NO idea how bad off she was, especially since all of the CICU team were always so positive.  It never entered our minds that we might leave that hospital without her.  Never once did I ask a doctor “Is she going to die?” because it just NEVER occured to me.  We always thought… “oh we are in for the long haul now”… but overall I guess you could say we had blind faith. Even through surgeries that nearly doubled the time they SHOULD have taken.  Even through days of seizing, severely impeded heart rhythms, talk of pacemakers, collapsed lungs, 106 fevers, double staph infections, second open heart surgery, 80CC pocket of fluid BEHIND the heart, lost weight, blood and platelet transfusions, and and and…………  I never honestly thought that we would loose her.

Maybe it was the ignorance that kept us going.  Maybe that ignorance was a form of protection.  Maybe it was GOOD that we had no idea.  I find myself wishing that we had NOT been so ignorant because if I had known then what I know now… things would have happened differently.  I would have INSISTED that they test the fluid that oozed from her wounds where they pulled her lines and drains.  I would have INSISTED they figure out WHY there was a 106 fever.  I would have INSISTED that they find a reason for the collapsed lungs (before 2 weeks in).  I would have INSISTED that they called the doc in the middle of the night when she nearly drown in her own chest.

I have to say … I carry a certain bit of guilt from that night.  We kept telling her… Kyleigh girl… you CANNOT be in that much pain… you are going HOME tomorrow… PLEASE don’t do this.  We were so desperate to go home.  I am just REALLY glad that she will never remember those days because it was NOT her fault.  She didn’t DO any of it.  She was the one suffering and the only people we could feel sorry for were ourselves.  We were exhausted, sick, and desperate.  Yet somehow there was relief when they threw her in the bed to wheel back to the CICU.  I have never really seen a flutter of activity like that before.  You could tell it was an “emergency”… it looked like something straight out of ER or Grey’s Anatomy.  On went the O2 canula and monitors, ekg lines and pulse ox.  In 5 minutes flat we had packed our entire life (AGAIN.. remember by this point we had moved her swing, her bouncy seat, bottle sterilizer, EVERYTHING to the hospital… we were LIVING there) into two red wagons and were once again headed back to the ICU to learn our “fate”.  It hurts me to know that I was so ignorant that I did not even REALIZE what kind of pain she was in.  Today… if this happened, things would be drastically different.  I play this over in my head often and think of how the ending could change.  Even with all of our stupidity and ignorance God kept his hand on Ky.  Her experience served to strengthen our testimony.  Our daughter has been legally “dead” twice and God has give her new life.  What could be more powerful a statement?

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