Day 18

Hailey had a high fever today that wasn't really going down much with Tylenol or Motrin and her heart rate was kind of high. 

Right now they feel like it is probably due to all the attempts we are making to wean her sedation drugs. Still, they have to rule everything out so they have re-started antibiotics and are taking cultures of her blood and urine. 

They are trying to make sure she doesn't have legionella, which is a bad bug that can be associated with pneumonia. We doubt she has that because they have taken labs and her white blood cell count and other infection markers look normal. 

So, we will see what happens. They tried to wean her bi-pap settings a little bit but they had to go back to the original settings. 

I talked to the resident physician tonight and he said that kids with lung disease tend to be very slow at recovering from things like this and then when you add her heart defect in, it is even slower. 

Ben decided to stay down here with the girls since Hailey has been kind of unsettled and he will be off later this week for Thanksgiving. Some very kind people at his work have donated time off so that he can be here. We are so very grateful! I can't even begin to express my relief at being able to have Ben and the girls here with me. 

Hopefully Hailey will keep making progress so we can go home together soon! 

Sorry I haven't posted a picture in a while! I keep writing these at the end of the day when I'm not with Hailey to take one.