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February 15, 2020

Day 3 of 5 for chemo.


She's had a fine day, but she's been SUPER tired.  No one is concerned, and it could definitely just be chemo administration.  Vitals have been OK all day, heart rate in the 140s, BP 90s/40s.  No fevers all day, so just that one odd one yesterday morning.


Her abdominal drain is acting up a bit.  They open it every 2 hours with the goal of draining 150ml of fluid.  Today it's a bit intermittent.  Sometimes it will drain out quickly, like usual, other times it sort of slows to a trickle within a minute or two.  Because it does drain normally "most times", they aren't jumping right into the de-clog solution they did before.  I don't know enough about it to know if there are any downsides to just trying that immediately, I'll have to ask.  But it does continue to drain, and her vitals have tolerated it nicely.


While awake today, she's had some very intentional eye contact (as sure as we can be that it's intentional), and she's moved her mouth "in response" to things being said to her.  We have no reason to believe she's mouthing actual words, because she was a limited talker before all this happened, but she seems to respond with intentional movement, whatever it might mean.  


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AND she's vocalized a bit today, which we haven't heard in quite some time!  ...It was because the nurses were messing with her and she was angry (and letting them know it), but still.  


She had gotten pretty vocal around her trach by October before things went downhill.  But with her decreased breathing ability over Nov/Dec, they had to inflate the cuff more to keep all the vent assistance in her lungs.  As a reminder, without the cuff (a balloon on the trach directly on the inside of the throat) inflated, air can sometimes escape up around the trach and into the upper airway.  I don't know what other purpose this serves besides allowing someone to vocalize, as it allows air pass over the vocal cords and out the mouth / also eventually allowing a speaking valve to be used.  The downsides to having the cuff deflated, is you can't guarantee where the vent support is going (it could go into the trach and right up out her nose without ever touching her lungs), and aspiration risk is higher.  Anyway, with the cuff nice and snugly inflated, she has not been able to make any noise in months.  But somehow she found some power behind her lungs today and made it happen!  Julia horn <3 


So that's all today.  Vitals holding steady, drain acting a bit wonky again, and super sleepy Julia.


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*********** ~~ Julia Adams ~~ ***********   

************* Official Links *************

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Julia's official pages: 

Website: juliaadamscancerfund.org

Facebook: Julia's Fight Against Rare Cancer - Fund

GoFundMe: gofundme.com/juliasfightagainstcancer


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.  A current summary can be found here: juliaadamscancerfund.org/summary




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!