Thursday, July 28, 2011

Reading Time

Last night in an effort to build more memories for my older children with Aaron we took the kids up to see him. We had each pick out two children's books and sat them by Aaron's bedside. They each read their stories and then sang him a song. It was the sweetest most precious time I have ever spent with my children. They were wonderful and told Aaron how much they loved him.

Our primary nurse was on last night. We talked about what happened over the course of the last week and what both of our frustrations have been. We have requested a care conference with the Attendings, Cardiologists, Nurse Practitioners, and his Primary Nurse. I am concerned some balls are being dropped and want to get things squared away. I'm frustrated with the "lets just see what happens" course of action and I want something more concrete. I was told by this week's Attending I need to be louder with my concerns, so that's what I'm going to do. I am going to be LOUD! I just hope its not too late to make a difference.


Cindy Lou said...

How wonderful for Aaron to have his siblings there with him. Good for you, you are Aaron's advocate and he needs you to speak up for him.

Sant Family said...

Denise, I hope and pray that Aaron's mission in life is to live out his natural days on this earth. I think it's wonderful for Aaron to have his siblings up there with him! And you go, girl on that conference!

RachelHixson said...

Denise & Ronny, Aaron has been on my mind all day. I'm so sorry I'm not there. Hold tight. Call me if you need to talk-- the unit has my cell number. I'll be praying for you all hoping for peaceful days to come. A conference is just the right thing and know there are so many care givers there who love him sooooo much!