Last night we were talking to the doctor and he told us that Gracie is so close to leaving the PICU, that he can see the light at the end of the tunnel--she is so close and just needs to keep moving forward!!!
By yesterday afternoon Grace was off of the high flow oxygen and just on a regular cannula and the millirone was off completely. Unfortunately though, Gracie didn't seem to be tolerating it very well--her heart rate sat in the 180s and she began to develop a fever. They turned the millirone back on to .25cc an hour and ran a whole bunch of cultures to see if Grace developed an infection because of her surgery last Friday. Throughout the night her fever broke, but she never really slept (she has been quite cranky with a lot of gas) and her sats were in the 60s, so they thought they would have to put her back on high flow. It seemed that we were hitting a bump that we just couldn't get over; but Grace managed to stay off of high flow today!!
During rounds today the doctors think that taking her off of both high flow and millirone probably was just too much and that they would let Gracie just rest and begin weaning milirone possibly tomorrow. But this time they will go slower than just turning it off from the .25cc.
So while I was there I just held Gracie and she was exactly where she wanted to be, she just slept so soundly that I could actually stroke her head and she wouldn't even budge. I was so happy because she needed some good sleep. Wish us luck that Gracie will decide she is ok with being off the milirone because once she is we should be on the floor as early as Tuesday or Wednesday--its all up to her now!! Gracie can do it, she has come so far!!