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December 17, 2018

Julia had her OR visit today to look into all her surgery locations for the source of infection. They didn't find anything immediately obvious, but they mentioned when they closed her throat up they had to put a lot of tension on the muscles. There is a chance a small hole opened up and the bacteria got in that way. If that happened, it likely healed over on its own because today it looked acceptable. They put a few more stitches in just to be double sure. They did check all her wounds regularly for outward signs of infection, but I imagine the back of her throat was hard to see with her tongue being so swollen, the breathing/suction tubes in place, and her head stuck in a fixed position.


The bacteria is in the streptococcus oralis family. (I don't really know what that means, and don't remember the more specific name... mostly mentioning it for all my nurse friends.) They've adjusted her antibiotics: they turned one off and added another. They also upped one of the broad spectrum ones she's already been on because her body is doing an over-fabulous job of filtering it out of her bloodstream, so it's not reaching her brain in "therapeutic quantities". The... brain juice... that was tested today already shows a reduced bacteria count, so we're moving in the right direction. They say the new antibiotic fights just this, so that's also encouraging.


With all of these antibiotics, I wish she could be on something to help her system get back to normal. Probiotics have been mentioned a lot, but apparently that's a no-go during chemo. They won't introduce any additional bacteria (on purpose) while she has a compromised immune system. Which makes sense. Hopefully her body will get back into balance on its own. They started her feeds after the OR today, but she threw up so they've stopped. They said it was probably too soon after anesthesia.


And they are entertaining the idea of a second shunt for the other chamber of her brain. It apparently is still experiencing minor swelling. They say it's nowhere near life threatening, but the absolute quickest way to get everything functioning optimally would be to be able to manage the pressure to that side as well. So I guess we'll see tomorrow if that's the direction they want to go. One of my dad's biggest complaints during his treatment was that he felt like an experiment. His little granddaughter has him beat.


And since she was under anesthesia again for the OR, she spent another day heavily sedated. She cracked her eyes a bit, but not enough to see if they're focusing on anything. And she just moved her hand enough to grab hold of her tiger. Hopefully she doesn't need another shunt, and we'll get some more alertness out of her tomorrow.




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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!