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July 12, 2019

I had a completely different update written for tonight, but that one will have to wait. Tonight is Reed's evening/night at home with Gabriel, but Reed got about 5 minutes with him before we had to drop him off and head back down to the hospital.  Julia has been having a really bad day - not just grumpy, but actual medical concerns.

Last night, though tired, she was happy as can be.  Today the nurse said she started as irritable, and then Tylenol helped her take a nap, but once she woke up things were not great.  She has thrown up dozens of times.  They think she aspirated on something as it's getting sucked up through the trach.  Her heart rate was in the 200s.  Her blood pressure was a bit low.  Her breathing rate was high and she's needing oxygen for the first time in a long time. And she has a fever, which is something you never want to hear while on chemo.

Chest x-rays don't show pneumonia.  Her GJ tube and shunt placement all seem correct.  They are sending all kinds of cultures off for testing: blood, trach secretions, mucus, urine, etc.  So far initial blood work has come back decent, as far as cell count.  They've given more Tylenol to hopefully help with the fever, and they've started on 3 broad spectrum antibiotics per her Oncology chart.  Oncology and Neurology have been notified.  I'm told the concern level is 'medium'.  It's always a bit elevated with Julia, but nothing of high concern yet.

Even the PICU attending moseyed on over here just to say hi.  He said he got word she spiked a fever... I wonder if he's expecting to have her back as a patient tonight.  

She's still doing a lot of barfing, and the color is now brownish (remember she doesn't really have food to puke up since that's in her intestines).  Possibly some blood; they're not sure.  But at least she's woken up a bit now that we're with her.  We've gotten a few weak smiles and high fives.  But her eyes are open and she's interacting, so the team is happy with that, saying it's not what was going on today.   It's a little nerve wracking when the team hangs out in her room and the hallway... just kind of watching her and her monitors.  I mean good... but still... are we worried or not worried.

But the most recent temp just a few seconds ago showed her fever has come down a bit.  It's 100.7; down from 102.  So hopefully headed in the right direction.  They'll adjust the antibiotics once they find the cause of infection.

Anyway, I still hadn't gotten over her trach falling out, and then the horrible trach change yesterday, and now all this.  I finally caved and took Ativan, so now I'm very tired.  

Just a pic tonight.  Hopefully only good things to report tomorrow.  But not a great day for the princess.  She's definitely not feeling her best. 

. .

. ********** ~~ 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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