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.