The good about today is that they have left me alone about my POA. I guess with media attention breathing down their necks, they are being extra careful with me. He is still asking if I am prepared to deal with taking care of a child on a vent if she goes home one day. My answer was OF COURSE! I still want Whits story out there! No other transplant patient should of been ignored like she was. She didnt deserve this. That coordinator does NOT need her job anymore! I am going to take this fight up with UNOS as well. Show them exactly what we have dealt with. Maybe that will bring about change in how these patients are treated! It is so unfair to give them hope and then ignore them when things are going wrong. I wish my child was not the one who had to change the way things are done around here! Why my child? The tears have yet to stop falling today. Whits kidneys are taking a beating with all of the medications. Not to mention she was given very little IV fluids in the past 7 days. I am not ready to see my child with a hole in her neck. It will be a long time before I hear the words I love you mom or any words for that matter. They are wanting to put a feeding tube in as well. Whit said ok. She is still fighting to live! All she wants is to live! So when you look around your lives and think things are so bad, please know it could be so much worse. Ours could be much worse so we are counting the blessings in the storm. My heart is heavy. The tears fall. My daughter is my hero. Anyone who knows Whit personally knows what kind of a gentle ,loving heart she has. She can be spunky at time. She gets that from me. My baby is fighting with all that she has and I will always be beside her to fight the fight. We will take the road she chooses. She is my blessing in life. I am blessed to call her my daughter. I am blessed to be her mom.
Posted on: Tue, 11 Nov 2014 19:24:22 +0000
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