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March 15, 2019

Vitals are really good today: Heart rate 130s, ET high 30s, BP 92/55.  Julia has slept ALL DAY.  The Benadryl they added to the mix has really knocked her out.  But it was added to help with the nausea, and she has only thrown up once all night and all day!  So that's really great.  She's been super comfy and has just been zonked out.  Today was day 5 (of 5) of chemo, so she's just exhausted.  In fact, she was only really awake for a minute or two and Reed tickled her and she was NOT happy!

The team reviewed all her scans in detail and as they expected, everything looks good (related to possible causes of her vomiting - shunt, abdominal, bladder, etc.)  So nothing new is being done there.  If she remains this stable for another day or two, they will look into swapping over her nutrition to the formula we want.

I talked with the case worker about her home care.  Lots of overwhelming information.  Apparently it takes about 8-12 weeks to train the parents, so that's why they want to start now.  Also apparently, there is a national nurse shortage... so it's possible there will be a delay in her release if there aren't enough nurses to care for her.  Because of that, they get us started really early with interviewing home nurses to hopefully have everything lined up in time.  They reviewed some of what we'll need to be able to do... and... it's just a lot.  Like, stress wise.  I realize I signed up to be a mom, but I thought the extent of 'saving her life' was putting up baby gates and making sure she doesn't put weird things in her mouth.  I didn't expect to have to like... give her emergency airways!  I'm sure I'll do what I have to do, it's just... not how I expected my life with kids to be.  (And then I remind myself that she's alive when she shouldn't be... so, trying to keep things in perspective!)

And I see sweet Julia made it into the local news today =) I like that her story is getting out there.  Hopefully she's able to spread some hope to other families in a similar situation.  (They sure did pick a funny quote from my posts though!  Out of everything I've written, they went with the one about the Stephen King trach dolls lol!)

That's all I have today.  I didn't see her today, and I've had a pretty awful day in general.  I started getting a pain in my upper left abdomen about a week ago.  I ignored it, because that's what I do.  But earlier this week it really started to get bad so I had a full lab workup done thinking it might be a kidney infection.  Everything came back fine.  Today it was much worse, so they sent me in for a whole abdominal ultrasound.  I got into the room and the lady mentioned a CT scan and of course I absolutely freaked out.  CT scan might as well mean, "We know you have cancer, we just need to find it"(!)  So... that wasn't a fun visit.  They took all kinds of images and sent them in for stat review (which made me even more nervous).  I've been anxiously awaiting a call from my doctor with results... but so far nothing.  And my medical anxiety was bad to begin with, obviously it's gotten WAY worse over this last year.  So every time my phone rang I had a mild panic attack... figures that Julia gets in the news today, so everyone I know called to tell me!  I almost thew my phone out the window, no lie.  

So that's all I have today.  My.... whatever it is, hurts pretty bad.  If it gets worse I'm supposed to go to the ER.  So far no suggestion as to what it might be.  It's tolerable if I don't like, move it, so I'm just taking it easy.  Hopefully I'll just spend the whole day tomorrow relaxing with Julia.  I guess worst case... Penn Medicine is literally right next door!

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

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers:  T-shirts - | 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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