Update on Kylie:
I’m so sorry to make y’all worry, it has been difficult to do an update because things have been so up and down, and change so quickly.
Kylie got two of her chest tubes taken out because the drainage has started to slow down and her hemoglobin has started to go up. 
Her blood pressure is still high
So yesterday morning they decided to deflate the cuff in her trach so that there was a leak, this would force Kylie to start trying to take breaths on her own.
She handled it great at first. They were able to get the leak to 80% and she never had a desat, her oxygen remained at 100.
They turned her FIO2 down to 30 and her pressure down to 6, which she has NEVER been at. I cried I was so happy
However, after awhile we started to notice that the oxygen to her brain (NIRS) started trending down and dropped pretty low. It was confusing because everything else looked great but because of this we had to change the leak to only 20%.
Her neuro exams are still considered “sluggish” and we can’t figure out why exactly. We are hoping it is something time will fix, and weening sedation (which we have already started).
Please pray that Kylie’s neuro exams get better and that I can hold her soon
Also, please continue to pray for the donor family
