My beautiful niece Gracie was recently diagnosed with Neuroblastoma (cancer). It is still early in the diagnosis and we are awaiting results to know more about the fight that Gracie will face. I've created this blog as an outlet for friends and family to stay informed about her journey and a way for friends and family to make anonymous contributions towards her care and the mounting expenses her family will face. Gracie is a fighter and the bravest 3 year old I know. Hundreds of people love you Gracie and are praying for you. "Be strong and of good courage for the Lord thy God is with thee" Joshua 1:9

Saturday, September 25, 2010

Day 1


Gracie had a blood transfusion yesterday and platelets this morning. she also has a fever so they started antibiotics and drew blood cultures from her double lumen line and they also needed to draw from her port which wasn't accessed yet. This was around 4:30 am. She said " but its in the middle of the night!" my thoughts exactly. :) So they proceeded to tell her she needed to hold still and not kick or put her hands down, not knowing how incredibly awesome she is at doing what she needs to and holding still. Add two more impressed nurses to the tally.
We didn't get much sleep last night cause she was puking a lot and in a lot of pain as well. her mouth and throat are bright red and raw and very painful, especially when she has to do her mouth care. I about started crying this morning watching her tremble in pain and still willingly open her mouth without a fight to do her mouth care.
I went and took a nap at the Ronald McDonald house when Brandon got here his morning, he slept there last night. I wish they would let both parents stay with her at night but I guess it's good for one of us to get rest. It seems he got here just in time for the worst of it and I know I would be so exhausted doing it all alone, I am so grateful he can be here.
Today they increased her pain pump doses and she is resting well for the last couple hours. they will try her food pump again and see if she tolerates it at all. If not they will start TPN tomorrow.

3 comments:

  1. Wow, it has been amazing to read about the last few experiences. You and Gracie truly are amazing. You all inspire me. We love you and are praying for you.

    ReplyDelete
  2. totally cried when I saw these pictures. Daddy and his little girl...his sweet exhausted little girl. Love you guys!

    ReplyDelete
  3. My thoughts and best wishes are with you all, I couldn't imagine how difficult it is seeing your child is such pain, I'm getting teary at the thought! I sincerely hope your little darlings health improves dramatically sooner rather than later. Love and best wishes, from another mother on the otherside of the world. xoxo

    ReplyDelete