We made it to the floor today! Lilli took a MAJOR turn in a GREAT direction. She is much happier, eating, drinking, playing, talking.... makes me feel like my little love is almost back to herself. She is even going potty on the big girl toilet again. She is sleeping now and her oxygen is 84 with only 1/2 a liter of oxygen :).
She will NEED to be on a VERY STRICT no fat diet (for 6 weeks) in hopes that her Chylo (spelled in wrong yesterday) effusions stay controllable. They said tomorrow her pacer wires will come out and when her chest tube output is less than 50 cc's a day the chest tube will be a goner as well.
Just praying we keep heading up hill. The last time Lilli had Chylo effusions we were in and out of the hospital countless times... although she was also having "issues" with pulmonary pressure (which could of contributed).
We are trying every "natural" option possible to replace what seems like her 100 daily medication... lots of pineapple juice for miss Lilli (her potassium is low and the med is HORRIBLE on her tummy).
Thank you for your continued prayers. Number 1 on the prayer list is that this chylo clears up and we can pull her chest tubes and head home :)
