Tuesday, November 13, 2012


One word describes how today turned out.....Horrible.  They were unable to get an iv today so we were unable to do the lung perfusion scan.  We had the IV team and let them try 3 times.  Twice in her arm and once in her head.  It was so hard to watch.  I feel so guilty putting my baby through all that trauma and for nothing.  I thought for sure they would be able to get an iv and we only needed it for an hour.  I was so wrong.  One of the hardest things I find about being a heart mom is I am always second guessing myself.  Am I doing the right thing for Raygen?  Is this necessary?  Is she okay?  Am I missing something?  What if?  I could go on and on.  Life is stressful, but when your child has half a heart the stress is triple a hundred million times.  I know for Raygen's future she will have to go through test, be poked, have echo's, ekg's and caths, but when your little baby is screaming after being poked and turning blue and you know begging for you to make it stop, how do I keep doing it?  First, my mother bear kicks in and I want to start slapping hands of people touching my daughter.  I just want to say "Were done.  No lung test and no tubes."  But that is not what is best for Raygen.  I want Raygen to live and for Raygen to live she has to go through the tough things to enjoy the good things.  It's not fair and it's heartbreaking to watch your daughter fight to live everyday and know that she will never be "better."  But were lucky.  Raygen is here and she is living, laughing and smiling and for all that to continue we have to push through.
We came home today sad, hurt, and felt defeated, but we will wake up tomorrow and move on and work out a new plan of action.  Raygen's ears are not getting better and she has to have the lung test to make sure that her stent is supplying enough blood to her lungs.  Both are very important and both very necessary.  At this point the plan is to do both test on December 6th.  She will be sedated before an iv is placed so hopefully they will be able to place one once if she is relaxed.  I don't think anything will make me feel better about having to put my daughter through painful situations and the fact that she is getting older and more aware I feel like our journey is going to get a lot harder.  I wish I could go through all the hard stuff for my daughters.  No one like to see their children in pain.  Right now my baby girl is happy to be home and playing and being herself.  Thank you God for bringing us all home safely today.