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July 31, 2019

Updated: Aug 2, 2019

Decent day - vitals are good and she's in a good mood, but she's been throwing up a lot these past two days.  The chemo isn't active so their best guess is mucus.  I guess Speech visited and wants to make sure the cuff on Julia's trach is properly inflated (this is a balloon around the trach [on the inside of the throat] that prevents fluid from passing - so it should prevent stuff from getting into her mouth/nose from her lungs, and it also helps prevent her from aspirating on her barf.  But as she grows, she creates more space around the trach, so it might need to be adjusted.  They just think her mucus is collecting in the back of her throat and causing her to gag.  

She had a session with both Speech and Child Life today.  Had some tea parties.  Did some coloring =) PT stopped by but she was sleeping peacefully.  She's been putting herself on her side to sleep regularly now <3 And today, for the first time, she pushed herself up!  She had been sleeping on her side, and she used her right arm to get herself more upright.  So, not totally like, sitting or anything.  But really great!  Everyone keeps commenting on the strength she's gaining (usually while being smacked).


Now that her trach vent tubing is draped over her right side (her good side), she is popping it off more frequently.  (This is just disconnecting the tubing FROM the trach, not pulling the trach out of her throat.)  In Julia's case, she can handle being disconnected because she can breathe on her own, for a limited time, but we obviously want to reconnect it right away.

The tubing is what gets the breathing support from the ventilator to Julia, be it extra oxygen, extra pressure (to help inflate the lungs / ease the effort of breathing), or guaranteed breaths (where the machine is doing the breathing for you).  Julia just gets minimal pressure support right now - just a touch above what we get normally.  What that means, is the vent isn't breathing FOR her, or giving her oxygen; it just gives her a little boost of pressure when it detects HER taking a breath, to assist with inflating her lungs.  This is needed because she's weak.  So when her tube pops off, she can still breathe 'just fine' for a little while.  By comparison, she would struggle quickly if the actual trach came out, as it's holding open the airway.

Anyway!  Now when she pops the tubing off, she recognizes the whooshing sound it produces, and immediately does her O face and points at it!  She sits nice and still while we pop it back on =) She knows it's not supposed to be that way so she lets us know and then cooperates.  I don't know why I get such a kick out of that.  Her little O face cracks me up.  It's like "Uh oh, look what Julia did!"


Gabriel is still sick, so he's remained quarantined with Aunt Charlene.  Charlene sent the sweeeeetest morning baby video today <3 He's learning words so fast, and he's such a joy, but the cold has definitely gotten down into his lungs - you can hear his stuffy nose and cough.  I've heard so many opinions as to when someone is contagious and when they aren't... but I have no intention on risking it.  Camp Aunt Charlene is in session until further notice.  I'll add the video to Julia's tea party.  In comments <3 


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

Julia's official pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's official fundraisers:  T-shirts: | Children's Book: Jewelry:

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. You can find them all on my Facebook page or Julia's website <3

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