We came home today! And the best news is that we are without the Foley catheter! We could have gone home on Saturday, but we decided to do a 24-hour trial without the catheter to see if her bladder could empty on its own. The team was skeptical there would be enough shrinkage from the tumor this early to make a difference, but it seems like there has been change enough to let her bladder empty.
This is huge for Lila. The catheter was a big infection risk and also hurts her mobility. We're thrilled to have it out!
For the past few days we have been dealing with some huge tantrums. It's nice that she feels good enough to throw a tantrum, but we are hoping that we can get her back into a routine soon. Bedtime has been brutal. Last night at the hospital she screamed for an hour before we could get her to sleep. I'm sure the whole 6th floor could hear her. It's tricky because she is obviously going through a lot for a 2-year-old and for the past three weeks we have made her the center of the universe. But we need her to go to bed! And we wonder- is she in pain? is this a side effect of one of her drugs? or is she just being a toddler?
We have to closely watch her when she is upset because we don't want her to rip out her NG tube. Most of the time she's being very sweet though!