January 9, 2020
Today has been pretty decent for Julia. Vitals have all been really great: heart rate 120s, respiratory rate 20s/30s, oxygen saturation 90s, ET 40s, BP varies from 70s/40s (low) to her normal 90s/50s. She has looked very comfortable, outside of things like bath and trach care... but she hated those during her best days. They've made her Albumin + Lasix daily routine official, to hopefully draw off some of the swelling. Other than her belly, which is always swollen now, the fluid seems to kind of move around her body. I assume the body doesn't really know what to do with it, so it just kind of makes it someone else's problem. Like, yesterday her eyelids were super puffy, today they look fine, but her legs are swollen. The only other new development is she seems to have a developed a pressure wound on the back of her head, pretty much out of the blue. They are really good at turning her, and taking the weight off of different areas regularly (as best they can with her limited movement / excessive swelling / million attachments), and her skin has been rock solid for her entire hospital stay - not so much as a pink spot, even during her 7 weeks of complete flat-on-back-immobility during her halo. But she now has a decent size wound. I'd say the size of a silver dollar. Reed is very involved in her daily care, and he didn't see a hint of it at any point. I understand pressure spots like that can kind of build up under the skin and then surface 'all of a sudden'. And where this is located, her hair is coming in kind of in chunks, and it's right above her always-pink surgery location, so I can see how a light bruising / pink area could have been missed. So she's in for a wound consult tomorrow to see what they can do (today it has been covered up and protected of course). Oncology has decided on a new chemo direction - I believe it is 5 days on, 28 days off, and does not require 'optimal' kidney/liver function. They want her to be off her current chemo for 1 week to flush everything out, so that has all been stopped, and she will start her new chemo next week. . I haven't personally seen Julia awake and 'aware' in quite some time now. I will see her peak open her eye for a bit, and maybe appreciate Peppa if it's in front of her, but not much more than that. Today I saw her eye was open like, 1/5 of the way. So I went over and got all in her face and started talking to her, trying to make her smile. I wasn't getting any reaction; she didn't even move her pupil. It looked like it was just stuck staring straight ahead (we've been there before). So I assumed she was actually sleeping, or unconscious... whatever she's doing these days, so I closed it for her. Then she opened it. So I closed it again. Then she opened it. So Julia made it pretty clear that she's still in there and wants her eye open thankyouverymuch. So I started talking about things she'd do when she was at home. I listed all her stuffed animals, and favorite cartoons, and favorite books. I expected her to just doze back off, but her eye got more open, to just over half way. I finally asked if she wanted to talk to daddy, and her eye had no problem looking over at his couch! Then her little mouth started to move. She can't make any obvious shapes with it, but I'm positive it was "dadadadada". I asked again, and the mouth moved again. Then she looked over toward the door for a bit, maybe trying to find him, then back to me. I was so excited that I FaceTimed Charlene... but Julia was sleeping again before the phone was done ringing (60% sure she was faking). So, definitely still in there, and definitely still a daddy's girl. . A Facebook Friend sent the COOLEST pictures! People are taking pictures from around the world holding signs supporting Julia. I LOVE IT! I wanted to share it so everyone else could do it too <3 <3
It looks like the signs:
- Say "Praying for Julia" (or message of your choice)
- Have the hashtag "#TeamJulia"
- And your location!
- And it looks like they are taken in front of some scenic local area or landmark (or your back yard if you have my level of energy right now) If you'd like to, I would LOVE for you to add yours! I think this is such an awesome idea =) Add them to tonight or tomorrow's post, and I will definitely get them into her memory book <3 [Or email firstname.lastname@example.org if you're not on Facebook] . I'm sure I have a video, but it will take a minute. I wanted to get the post up since it's after 11.
YouTube: https://youtu.be/ku5idh1LVkU . . .
*********** ~~ 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 Jewelry: https://etsy.me/2E1mR8i 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