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January 24, 2020

Another exciting morning. Her blood pressure read 30/11 again. This time it was during shift change, so with the extra staff, they fit an impressive ~15 people into the room. They immediately started treating her as if the 30/11 was accurate (fluids, etc.), but they also brought in another machine because they didn't seem to believe it. After interventions and the new machine, her BP read a bit higher at 80/50. I'm not sure if they are convinced that low BP was accurate, given her presentation and other vitals. The new IV they put in her left hand is already useless. The Epinephrine is rough on it, and sort of created a red streak where the vein was (I should have gotten a picture). So given the continued BP issues, and their need for good access, they wheeled her down to IR (Interventional radiology - they use imaging to guide the placement of IVs) to get a better line put in. It's still in her left arm, but in a larger vein... artery... still don't know the difference. Since then her BP has been more stable, 80s/50s. All other vitals are fine. No temp concerns. Today her limbs have been much more room temperature (rather than ice cubes). She was awake and alert this morning, but since all the action, she's been pretty zonked out. No much else to report. Exciting morning, and then lots of sleeping. ~~~~ Video in comments: Lots of people ask what her symptoms were that prompted us to bring her to the ER. It was only a stiff neck, and it happened so subtly, it wasn't super obvious anything was going on until the last week or so. I put a few short clips together to show what it looked like the week leading up to the ER. We noticed she started to prefer sleeping in positions that kept her head cocked back, and she wouldn't look down when you'd expect her to. Otherwise she seemed pretty normal and happy. So we thought she was just being a strange toddler. Finally, it was clearly causing her pain when we'd have to adjust her head into a more neutral position to get her car seat buckled, so we thought she had a pulled muscle (as worse, something broken... though she had taken no falls). But when I called her pediatrician and mentioned a painful stiff neck one evening, they sent us to urgent care with the concern of meningitis. And urgent care wouldn't touch her with those symptoms, so they sent us to the ER. (The ER tried to sedate her for a CT scan, but Julia has refused sedation since day one! So they sent her to CHOP.)

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: Car Magnet:

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

Chordoma Foundation:

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

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