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

Wednesday, December 8, 2010

Still here in PICU

Gracie is still intubated in the PICU. She now has pulmonary edema which they think is from a platelet transfusion she had, although it could be several other things or all the fluid. She has put on ten pounds of fluid in 5 days!!! That is ridiculous. She is on lasix to try to get her to pee out the extra fluid but it also causes her to have metabolic acidosis. Her blood ph is still normal so that is ok. Her sodiums have been a little high but not too bad. I think we will stay away from the ddavp as much as possible. She only had the one dose. She is beyond frustrated with being intubated. She tries to mouth the words but a lot of the time we can't understand and then she gets more frustrated. It breaks my heart! I had to walk away tonight for a few minutes and cry cause she was so sad and frustrated. I had her daddy see if he could tell what she was saying. She asked if he would take her home. Poor angel. She has been so patient and hopefully they will get her extubated in the morning. Thy are weaning her off slowly and she is doing ok so far. She needs to finish her last two doses if radiation on Thursday and friday. Then we are going to do a hospital to hospital transfer on Monday to ft worth for her pre- antibodies workup. They are talking wih insurance to get Them to approve the ambulance.
The blood cultures are negative now for the last few days so they cut back to one antibiotic. She is c diff positive for the 4th time and starting on flagyl for that. It is so frustrating to watch her suffer.
Please keep praying hard for her.

5 comments:

  1. Love you! I'm so sad for poor little Gracie no chlid should have to suffer so much.

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  2. lee-lou I can't imagine how hard it must be to watch her suffer. I'm glad Brandon's been able to have some time off to be with you. love you all

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  3. Just wanted you to know Angela Williams sent me here and you are in my prayers.
    Love
    Zoe's(cp:zoebear)
    POP

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  4. I'm so sorry to hear that Gracie is hurting so badly. Your family will continue to be in our prayers.

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  5. I am praying SO hard for all of you. Sweet baby Gracie...my heart breaks for her. I know that she is uncomfortable and that she just wants to go back home where it is safe, comfortable and familiar. I hate to hear that you are heartbroken, as I know how much it hurts to see your child in pain and be unable to provide much relief. I pray to God every day that he sends comfort to Gracie and to your family. My heart and thoughts are with you all always.

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