March 7, 2020
Julia's had a really stable day. Vitals are all decent: heart rate 170s, BP 70s/40s. No fever today, and heart rate is out of the 190s, so it might have been temp-related yesterday.
The only new concern is the green fluid coming out of her stoma (trach hole). This appears to be stomach bile-ish, which in itself isn't a concern... it just shouldn't be in her airway (and it is, if it's coming out of her trach). I'm not sure how it's getting past the balloon on the trach, or why it's just happening recently. Is it even stomach bile? Or is it some sort of green mucus that is in her lungs? I have some questions, but I haven't been to the hospital today to ask. (And I'm sure if there is something to do about it, it would be being done already.)
I called the nurse a bit ago and she said Julia's continued to have a really stable day. She hasn't personally seen Julia open her eye much lately, but today she tried to change things up on the iPad. She put on a cute show of kids singing songs, rather than the typical cartoons. She said Julia's eye has been open quite a bit watching it! Her eye isn't moving, but it seems to at least have her attention =) So the nurse seemed pretty happen with that.
The realty company Reed and I (and Jonathan and Charlene) used to buy our homes, The Chris & Caleb Team of Keller Willams, hosts a family fun day every now and then. Today it was bowling. Jonathan (Reed's brother - family watching Gabriel) was already planning on taking Joshua (Gabriel's 9 yo cousin) and Gabriel. Since Julia's having a good day, Reed and I decided to surprise Gabriel. He was SO HAPPY to see us!! And we showed up at different times, so he got surprised twice <3
We got to watch Gabriel bowl for the first time, and then we had pizza and played a bunch of arcade games. Gabriel really liked air hockey, and Joshua did a great job holding back and letting Gabriel do it. (But then I played all the games Joshua wanted to play, and kicked his butt at everything... Aunt Amy doesn't go easy. I don't care that he's 9. I've got DECADES of gaming experience on him... he doesn't stand a chance =) )
Reed was recognized several times. It helps that he wears literally the same orange fleece and baseball cap everywhere. A few people asked if I was Julia's mom (they probably recognized Gabriel), but I was so busy chasing him around I didn't get to stay and talk. I feel bad... I would have liked to talk. But the two hours went by super fast.
It was a really nice day out. I did my best not to think about Julia. Which feels awful to type. But... Gabriel deserved two happy parents just focused on him. And it's way too easy to get really down and lost in depressing thoughts when you constantly remind yourself what your other child is (so extremely unfairly) missing out on. So hearing she had a stable and comfortable day really helped.
Video in comments.
*********** ~~ 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