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November 28, 2018

Updated: Dec 23, 2018

I just spoke with Julia's nurse about how today went. She had a good day. They've deepened her sedation again because she kept waking up. She has a fever, and some brown secretions from the mouth, so they're treating her for an airway infection. They're waiting for cultures to come back to determine exactly what it is, and adjust her antibiotics accordingly. The nurse said that can happen from the breathing tube she was on previously - one of the reasons they wanted to change it out was because it was more difficult to clean. They did not seem concerned about the fever.


They're continuing to ween her off her ventilator and she's doing a good job with that. They need to be extra sure she's good to go once they remove her tube because many of their normal oxygen masks won't attach correctly with her halo. The nurse explained there will be an entire team of people in the room when they wake her (ENT surgeons, neurosurgeons, etc.) She believes the order is to stop her feeding tube tonight in hopes that tomorrow might be the day, but realistically it could still be Friday.


Reed and I are STILL sick... this cough is awful and it's just not going away. So we're kind of hopeful it will be Friday. The nurse said someone will be giving us appropriate notice so we can get down there in time, whenever it happens.

Haven't been able to hug this little girl in TWO WEEKS!




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!