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

Thursday, May 6, 2010

G button

Gracie had surgery yesterday to put in the g button. The surgeon was Dr. Lee and she did a good job. She did it laproscopically and made an incision but couldn't find her tiny stomach so she made another small incision on her side to hold up her liver so she could find the stomach easier. When she cut the stomach itself, she bled more than she would have liked for her to so they gave her platelets. She is doing well with it so farand they have started her on pedialyte through the g tube slowly at 10 ml per hour. They will start her on pediasure tomorrow and then a formula for continuous nighttime feeds.
She also had a fever today and bloody diareah so they tested it and she was positive for c- diff. Clostridium difficile [klo-STRID-ee-um dif-uh-SEEL] is a bacterium that causes diarrhea and more serious intestinal conditions such as colitis. So now she is on two antibiotics to get rid of that. Her spirits seem pretty good today but she is still very very thirsty. Trying to maintain a balance with sodium levels and hydration and managing her diabetes insipidus is a constant struggle and there are no easy answers. There are no documented cases of Diabetes insipidus and neuroblastoma. It is hard. We are hoping she responds well to the feeds and will come home soon.


  1. She is going through so much right now, what an amazing little girl. Hang in there everyone, you are in our prayers!!

  2. Wow Lisa, that is rough! Any one of those things is bad enough, but having them all at once is beyond horrible. We are praying for you and Gracie every day.

  3. Hopefully the g-button will allow her the calories she needs and also help manage the DI more easily. Matt's DI is still the biggest challenge of his day to day care. We are getting better at managing it but it's still a struggle. Matt has no thirst mechanism so his sodium will get crazy crazy high (172 is the highest......) but he still won't feel like he wants to drink! We are still saying prayers for your little Gracie! Glad she's feeling pretty well right now.