We have been dealing with the same things this week. Daphne has a good day, then she doesn’t. One day she has a good chest x-ray and then the next its not.
Early this week I noticed that Daphne got a new tooth! That was very exciting to see. It’s a front bottom tooth.
Unfortunately, after so many pretty good days, Wednesday we had a bit of a set back. Daphne was working so hard to breathe that they had to put her on something called C-PAP. That stands for continuous positive airway pressure. It is actually the same thing people use for sleep apnea. It helps inflate her lungs.
It also didn’t seem like the chylothorax was going away quickly enough. It is what is causing her chest to be so wet. So instead of being on her special formula with medium chain triglycerides, she is NPO (no food). In addition to this she was also given another medication to help dry up her chest, octreatide. This new med is not compatible with much so she was taken off her morphine infusion! She is still on morphine, just an oral dose. She has handled the switch very well. And although she is on a mask now, she doesn’t seem to mind. We are hoping the CPAP will give her lungs a bit of a break and a chance to get stronger and that her chylothorax will go away soon which will also make it easier to breathe.