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April 28, 2019

Julia had an OK day.  Nothing wrong, just really tired and a bit grumpy.  I guess we can't blame her.  Blood pressure has been steady since that one event a couple weeks ago.  Other vitals are fine, but heart rate is randomly getting high (180s).  They say she doesn't need any blood yet, but they're keeping an eye on it.  Her levels are falling now, and should bottom out in another few days, so they're always watching for infection.

Respiratory is having a difficult time trying to time her breathing sprints around her round-the-clock naps.  During the day she's only on "pressure support" (the vent just keeps a small amount of air flowing so her lungs stay inflated).  At night, when she sleeps, they give her some extra help - a little oxygen every time she takes a breath, and a guaranteed minimum number of breaths every minute.  They're running into problems if she's on her daytime settings but takes a nap.  She is SO exhausted, that if she's in a deep sleep without vent support, her breathing gets reeeaaally slow (like 6 a minute) and her oxygen saturation starts to drop.  So then they have to come in and turn the vent back on.

It's not an emergency, medically, (this is why she's still on the trach/vent).  It's just that every time they miss a sprint, she misses out on that opportunity to gain strength.  I just really want this trach out sometime!  Little Miss needs to get better at breathing on her own for that to happen. (She does great on her sprints if she's awake - just not so much when she zonks out.)

Baby brother visited today, and despite her being exhausted, they had a really good time together <3 They played "pass daddy's hat" for quite a while and they both thought that was the best thing ever.  Julia put it on her own head several times and was very proud of herself!  She she thought it was hilarious when Gabriel hugged Big Peppa <3 But Gabriel needs a nap, and right now they're both in cartoon-coma watching some toddler songs on the iPad together.  I can't wait for him to visit when she has a bit more energy.  I know him being around her will really encourage movement.  

Short video of their visit in comments <3 


. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

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

Julia's *only* fundraisers:  T-shirts: Children's Book: Jewelry:

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

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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