Updated: Feb 20, 2020
Other than the abdominal drain kind of acting up, it's been a pretty good day for Julia.
Vitals have been fine: heart rate 150s, ET low 40s, BP 80/40. No fever in several days now, and all cultures are negative (as expected). Oxygen saturation in the 90s with oxygen at 30% (21% is 'room air'). She seems very position-dependent as far as how well she does. We've noticed she needs a bit more vent support when she's on her left side vs her right. Things like that.
The only thing going on is the drain is sort of slowing down again. They want to drain 150ml every two hours, but sometimes they're only getting 120 or so. There is clearly fluid in her abdomen needing to come out, but it's slow going. They noted her kidney numbers are "slowly getting worse again" (I assume from the pressure buildup). The drain seems to do OK for the first 100ml or so, but then it slows down. So I'm not sure if that's indicative of a clog or more of a fluid pocket (where the entire fluid pocket is being drained, and the rest of the fluid is inaccessible).
But she's had a pretty alert day. The nurse is 'positive' she saw Julia mouth "dada" several times. Reed saw it too. I haven't seen it myself, and I still don't believe it's been on demand, but that's several people now who are pretty sure it's happening. She's also been great with eye movement - definitely finding us. It will still get lazy and wander away, and she might have a hard time focusing, but there is no question she turns it toward what she wants to see.
And the nurse today said Julia is cooperating with mouth care. She will bite down at first, but then she opens her mouth and lets them clean her teeth. She also stuck out her tongue seemingly intentionally at one point =)
And as soon as I saw her today I got in her face and made silly noises. I'm not positive, but I'm 40% sure she tried to smile. (We haven't seen a smile in... months I think. I'd have to scroll back through pictures, but I'm pretty sure early December.) Her face is just so pudgy with the extra fluid and steroid puffiness that it's hard to tell if it was a smile or grimace, but I'm mostly sure it was a smile. For like, half a second. I tried to get it on camera but she wouldn't do it again - instead she got sleepy.
I really love how all the nurses adore Julia. Obviously we know the PCU nurses love her and want her back, but even the PICU nurses say they fight to care for her, and are super happy when they see they have her. I don't know why I think it's extra sweet when the guy nurses want her too... but I do. And they do. It's awesome. <3 Like our nurse right now is a guy, and he looks strong enough to be the one everyone goes to for physical assistance in an adult ICU. But he's here caring for this little toddler with so much tenderness. Calls her "girlfriend" just like all the lady nurses do. So sweet.
Gabriel had his second swim class today. Hated it. Cried the whole time. Then when asked why he was crying, he yelled "I don't know!". Charlene is thinking of taking him to a family swim night with his cousins so he can just enjoy the water with no one pressuring him to do anything.
Pictures: I received these awesome painted rocks. They are nice and heavy with a beautiful gloss over them. And they are PERFECT! Look at this Mulan one, for her "she's not a princess, she's a warrior" dress last winter <3 And the Fuck C*ncer is a favorite of mine. They got the plate and colors perfectly for how Julia colored it... back when we only knew about my dad fighting terminal cancer. And they're sitting in front of a beautiful collage picture frame that's now on my desk <3
I have a short video for comments, but internet is super slow. Might take a few minutes.
*********** ~~ Julia Adams ~~ ***********
************* Official Links **************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers:
T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx
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. A current summary can be found here: juliaadamscancerfund.org/summary