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December 15, 2018

Updated: Dec 22, 2018

Julia is doing well today. Her vitals are stable. They expect to get results from the cultures tomorrow to help direct her antibiotics. Her brain pressure is good; you can see her shunt in the picture today. Tomorrow they will take her to the OR to get a closer look at all her mouth incisions to try to find the source of infection. If anything looks wrong, they'll repair it and stitch it up (another fat graft is possible if they're not happy with how things look, but let's hope that's not needed. I'm tired of my little girl getting cut into). They are temporarily stopping chemo so her body can focus 100% on fighting this infection. Because her cancer is (surprisingly) stable at the moment, they don't believe a few-day break in chemo will have any negative effects. So that's the current plan.

She's sooooo tired and weak, but still successfully managed the "daddy thumbs up sign" after quite a bit of trembling. That was especially nice to see considering yesterday's brain swelling event (which I was told today actually resulted in a "very minor stroke", according to the damage they see!) Charlene was stretching and bending her legs to relieve some of the constant laying around, and they just quiver when having to give any resistance at all. I can't wait for her to get over these speed bumps so we can start physical therapy. Her little body needs to rebuild its strength!

And she was cracking her eyes just the slightest bit today. Unfortunately they aren't focusing on anything, they just kind of stare straight ahead. We are being told that this is likely due to the active infection, and is not a sign of brain damage... but OMG is it scary to see! I'm putting my faith in the doctors right now and trying not to freak out about that. Her pupils are responding correctly to the flashlight again, so at least there is visible progress there.

I feel like every day I'm lowering my standard of what would make a good day... at this point I just want her to LOOK at one of us with intent.

Hoping for conclusive results on cultures tomorrow so we can start the best antibiotics.

Edit: I'm just looking at this picture again... I want to hug the nurse who so tenderly washed her hair and put it in pigtails around this brand new incision. I can't get over how amazing her nurses are...

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