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.