January 15, 2020
Julia continues to be a popular girl. Right now her vitals are decent: heart rate 140s, ET 40s, BP 92/54. She's getting some vent support, but nothing extreme. The continued unknown is this fever. She's had it on and off all day, with a high of 101.8. With her elevated heart rate, fever, elevated white cells, and possibly-related lower BP, she's really showing signs of an infection. But they just can't find anything. They've tested and re-tested every fluid that can come out of her and so far everything is totally normal. She does have the candida in her urine, but she's been receiving treatment for that, so they wouldn't expect her symptoms to continue. She had another low blood pressure "event" late this morning. Nothing like Friday, but I guess enough for immediate fluid intervention. They were prepared to push some specific BP medicine, but she responded really well to fluid and everything kind of settled itself out. Since then her vitals have been good other than a slightly elevated heart rate. I also wanted to mention her eye since it's made an appearance in several pictures and videos lately! It does open, and it "sometimes" finds stuff, but it's not great. I would say... 15% of the time it's open, it's able to focus on something. The majority of the time it's just kind of staring straight ahead. This isn't a new development, this is just what it's done since she's kind of come-to this weekend. No one is sure why. It could be a lot of things. Seizures are always a possibility. Dizziness due to brain bleed. Zoning out due to new pain meds. Actually sleeping and the lid just opens. Tumor progression on optic nerve and she's just not seeing well enough to respond (like the right eye). So I just didn't want to give the impression that her eye is great, because it's hard to tell in the pix. It's definitely not what it was a month ago, but we do our best to position Peppa in line of sight, just in case she's awake and can see out of it <3 . Chemo is being held another day or so due to her high white counts and fevers. They want that to get a little more under control before they start. And while the nurse was reading me oncology's notes, again, Friday was referred to as a "septic episode". And I think I heard the doctor mention that too. So I guess that's officially what it's being called. ~~~~ Video in comments: I took a video of my attempts at getting a physical reaction out of her limbs or face. It's... mostly unsuccessful. It's not a super happy video, because you see her zombie stare, but I guess I'm hoping this new chemo kicks in and then everyone can appreciate the improvement better with knowing where she is now. And then I added a short video of happy Julia from just a few months ago!
YouTube: https://youtu.be/FMRP9UlqMfU . . .
*********** ~~ 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