Tuesday, January 14, 2014

Its not fair

  I woke up this morning when it was still dark outside.  Everyone was sound asleep so i quickly got ready and headed to the hospital by myself.  Its nice to be in the silence.  I can process everything that is happening to our family.  I take deep breaths the whole way to the hospital.  That first look at Capri still takes my breath away.  A few days ago she was playing and smiling.  Now she is so swollen her eyes look a bug.  she is paralized which is a horrible thing to ever see happen to your child.  She looks like she is already gone.  I can not wait until i can hold her again.  For her to squirm around and cry and laugh and do everything that a 6 month old should be doing.  
Walking through the cardiac unit, almost everyone in there is 80+.  Capri is the only baby and there is one 4 year old named Evan in the room next door waiting for a new heart. These 2 kids don't deserve to be here.  Everyone else here has lived there lives.  Their hearts worked for them for this long, it is expected to have some bumps in the road at that point.  Kids should not be here.  they should be outside playing with their friends without a care in the world.  Its not fair.  

Over the last week I have gotten bitter.  I am trying so hard to stay positive but i read things on Facebook that says "my poor baby has a runny nose and a cough, its so hard to see him sick i hate this"  things that i have written myself probably 100 times.  But now all i can think is you have no idea what hard is.  You should be so grateful that your kid just has a runny nose..  You should be holding him tight taking care of him happy that you are in your home and not in a hospital.  This last 6 months have changed me.  I have seen a world that no one should ever have to endure.  I have met so many amazing families in the hospital that don't deserve to be here.  Why did we get chosen to have to go through this?

Capri was in SVT for almost 24 hours before they decided that she couldn't handle it anymore and it was time to convert her.  We tried the adenosine medicine first.  I told the doctors that this medicine never works.  it doesn't even slow her heart down let alone stop it.  They didn't believe me and said let our doctors try to make sure they were doing it correctly.  They tried and nothing.  they tried again.. nothing.  No one ever believes me :)  they discussed why this wouldn't work and that she possibly wasn't in svt.  then one doctor said " her right atrium is SO large, maybe the medication is just getting diluted and she needs a really large dose.  The text book answer is you don't use more than .4mg for someone her size.  That is the max.  They decided to try 1mg.  that is more than twice of what we have ever tried.   Dr. Pilcher was worried .4 would stop her heart to long, what is 1mg going to do??  Well, it worked.  It kicked her out of SVT and we didn't have to shock her.  Thank God we didn't have to shock her.  

We spent the rest of the day coming in and out of her room, taking our other children to explore the hospital and making phone calls to family to keep them updated.  

Tommorow is the day.  The day they will fix Capris heart.  I am scared to death that there is going to be complications but so anxious for my baby to get better again so i can hold her in my arms.  I miss my baby girl.  I miss our family being whole.  We are broken right now.

Side note:  We talked to the kids today about capris surgery and asked if they had any questions or if they were worried about anything.  Ashton told me that he was very worried that the glue wouldn't stick.  When I asked him what he meant he said " well when the doctor fixes her cracked heart, what if the glue doesn't stick?  Then it will just crack back open and she will need surgery again?"  In his mind capris "broken heart" is the cracked heart you see in pictures.  Just glue it back together and all is good. If kids ran the world life would be so much more simple.