I came down to the hospital this afternoon expecting to see the last half of her "really great morning". But as soon as I got here, I knew something was going on. At this point, I'm still not fully convinced I'm not going to have really bad news by the end of the day. She had a great morning. I was home doing laundry and Reed sent several pictures. She was up in her chair, giving out lots of smiles and giggles. I got here in the late afternoon and the nurse said she's had a great two days. No vomiting, pleasant, alert. Slept for 5 solid hours last night, and two great naps today - "unusually good" for her. Just her funky eye. Actually, upon checking under the lid today, they noticed a large red inflamed type area. They ordered warm compresses and whatever it was cleared up completely in a few hours. She was on her HME for about 1.5 hours today, but struggled to keep stats up while napping so she went back on the vent. But as soon as I got in the room, and she was waking up from her nap, I knew she wasn't right. She was just looking at me with her one eye and something was 'off'. Reed tried to get her up and sitting in the bed, and even while doing that, the nurse was watching her very closely. She kept asking "Are you OK Jules?" Not urgently, Just... kept doing it. Julia got seated up in bed, and I got several good pictures (like the one in the post). She wanted hugs from me, then Reed, then me, then Reed. She smiled, and didn't appear to be in any pain. But she declined from there. Still no pain, no groaning or anything, but I'd say over 2 hours her right arm became as weak as her left. She wanted her iPad, but she could barely lift her right arm to control it. She was barely able to touch her fingers to the screen. She also could no longer keep herself sitting upright, she just either flopped to the side or purposefully pushed forward into Reed. The NP observed for a while and agreed she was very out of it, overly lethargic and weak, which was a huge change from earlier today. Vitals remained stable. They ordered a CT scan and even getting her ready to go down she didn't fight at all, which isn't like her. On the way to the CT scan she started de-satting so they bumped up her oxygen and she recovered. I've been waiting for the results of the CT scan to post. They just came back - no stroke, no bleeding, pressure is fine. They can't accurately evaluate the tumor with the CT scan, so no comment there. But with how she's been acting, stroke/hemorrhage/pressure were the concerns. Neurosurgery has been called to come look at the shunt (but pressure is good). Neurooncology will get in the loop tomorrow and decide of an MRI is needed. Honestly it wouldn't change anything - we're already attempting to treat as much as we can. So we thought Julia has had some really good rests today, but now we're not so sure. She's been sleeping again since the CT scan... no Melatonin or anything to help. She hasn't done this in... almost a year. Reed and I are not convinced she's just napping. The NP pestered her a bit and was able to get small reactions, but nothing like you'd expect from Julia. Her physical presentation a few hours ago was so alarming, I was sure I'd be announcing the worst tonight. So right now she's 'sleeping' comfortably, but we just don't really know. With the eye, then the weakness, then the weird sleep... this is all a repeat from January just much faster. Is she actually sleeping or is she headed into coma? So, tonight is pretty awful. Right now we're just waiting and watching. At least she's comfortable. . . .
********** ~~ 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://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