November 13, 2019

Day 2 in the PICU. The responsiveness of Julia's left eye (good eye) started to improve last night with the external shunt. And while tired, she also had a few periods of lucidity where she seemed more like herself. A very drugged-up version of herself. They determined a shunt malfunction of some sort was likely and got her scheduled for the OR today around lunch time. They did another incision on her head (poor baby) and opened up the shunt. ... a lot of technical stuff I didn't really understand, but a "flush test", or something, didn't work. So they replaced the tube that runs from the shunt to the enlarged ventricles, and then the flush test worked perfectly. So neurosurgery determined there had been a shunt malfunction. And I guess shunt malfunctions don't necessarily happen all at once, they can come and go a bit at first, which might explain why Julia had some weird episodes but the original CT scan on Sunday seemed fine. It may have been malfunctioning on and off for several days or longer. The procedure went great. The external shunt is removed and both head incisions are stitched up. She can take Tylenol for pain relief, and if she seems uncomfortable, they can give her something a bit stronger for a few days. Her feeds just started again about an hour ago, and they would like those to run for 12 hours before re-starting chemo and the new medication. So hopefully tomorrow if she stays stable. While she did throw up her original dose of this second chemo the other day, our oncologist does not believe that's the norm. This chemo is very well tolerated, and the hope is it was the shunt issue. So we'll try again.

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As far as alertness, it's been minimal. She's VERY loopy. This is two days in a row of heavy sedation and surgery. She's come out of sleep a few times today. She seemed mostly there. Asked for daddy. Made O face when she heard brother. Asked for iPad. Successfully controlled iPad with her right hand. The movement was tired, as expected from sedation, but not "off" like it was during her episodes. Her left pupil is responding MUCH better to light now during the neurological checks (the right remains unresponsive). But she is still doing her periods of spacing out - we've seen several today. Her left eye is open and she just stares at nothing / reacts to nothing. And then seems to "wake up". So... possibly back to seizures, but they'd need to catch it during a seizure study to be sure.

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Gabriel and cousins were down today to do a bunch of hand print art / molds with Julia. There are some cute things in the works. Julia was sedated so she was very cooperative =) Gabriel was NOT sedated and he was very much NOT cooperative. He hated having paint on his hand. So... he contributed to a single item before we abandoned that idea. We left a space for his hand on others and Aunt Charlene will need to do them while he's sleeping or something. We're thinking of having everyone back down here on Friday for cupcakes for little guy's 2nd birthday. Apparently his favorite is strawberry... I'm his mom and didn't know that. He's now lived with Aunt Charlene's family longer than he's lived with mine. I didn't get to bake Julia a cake for her 2nd birthday because she was in the hospital... just a few doors down from where we are now. I'd really like to make something for Gabriel, but I don't even think a trip to the grocery stores is in the cards between now and then. Hopefully next year. ~~~~ Pic tonight: Gabriel and cousins visit and a closeup of Julia's pretty face (partly to show off lashes, partly to avoid bloody stitches). Julia's alertness was intermittent today so it was hard to get a video. I got a short clip of Gabriel trying to climb up into bed with her. It's all he wanted to do. He had been saying "Hi Julia" (or "Jew-yo") and she would give the smallest smile through her sedation =) So I started filming. He says it once more and then tries to get in bed... then decides he wants to press buttons on her vent.

YouTube: https://youtu.be/0Kkyfok5KEg . . .

********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Website: juliaadamscancerfund.org

Facebook: Julia's Fight Against Rare Cancer - Fund

GoFundMe: gofundme.com/juliasfightagainstcancer

Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph Car Magnet: https://tinyurl.com/y4nxr3lr

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd

Chordoma Foundation: www.chordoma.org

If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3