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January 14, 2020

Julia's nice and comfy now. Last night she had the interest of the attending physician for a while, but today she's been pretty good. Vitals are all solid (heart rate 130s, ET 30s, BP 90s/50s). She's still on room air oxygen on the vent which is fantastic, with a very reasonable amount of pressure support.

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While she was observing Julia, I asked the doctor a bit about what happened over the weekend. Here are my non-medical (likely not perfect) notes.

They are referring to what happened as 'disseminated shock'. According to Google, this is "rare, life-threatening, complicated condition that can occur when someone has severe sepsis or septic shock".

The doctor agreed that this condition is most often associated with septic shock, and it was treated as if it were, but so far no organism has been identified that could have caused it (urine, blood, fluid, respiratory cultures have all not grown anything). I need to confirm they've also checked the fluid they're pulling off her abdomen, which, I think, would also catch an infection from her brain since her shunt drains there. ------

Here is what Google says about septic shock:

"Septic shock is a severe and potentially fatal condition that occurs when sepsis leads to life-threatening low blood pressure. Sepsis develops when the body has an overwhelming response to infection.

Knowing how to recognize and prevent septic shock is vital. The body usually responds to an infection by releasing inflammatory substances into the bloodstream. These regulate the immune system to fight the infection.

When the body loses control of this response, it triggers damaging changes to the organs. As a result, they can become dysfunctional or even stop working entirely. This condition is called sepsis.

If a person with sepsis has low blood pressure that does not improve with fluid treatment, this means that their body has gone into septic shock. They will need medications called vasopressors to keep their blood pressure high enough to get blood to their organs.

Without this treatment, insufficient blood flow can result in vital organs not getting enough oxygen and beginning to fail, such as the brain, kidneys, lungs, and heart.

Sepsis is often fatal."

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I wonder if septic shock is what the doctor was suspecting the night that everything was super intense.

Anyway, last night she had a higher heart rate, that kept (slowly) climbing despite extra pain relief, her breathing was a bit uneven, and she had random slight fevers throughout the day. New labs also showed a significant increase in white cells, which could be due to cancer or infection. So they messed around with the drug combo she was on, and undid some recent changes in antibiotics. She does have candida in her urine, which they've known about and have been treating, but so far nothing else is growing anything. She did seem to respond to extra fluids and a change in steroids. Pulling so much fluid off her body is a delicate balance, so things may have just gotten out of whack. I also asked about the pressure wound on the back of her head. The day nurse changes the dressings once a day, and the wound care team comes in every three days to check progress. The night nurse hasn't seen it, but said during shift change that the day nurse referred to it as 'fine'. So, I assume it's healing as expected. .

My understanding is oncology is hoping to start her new treatment plan tomorrow. It's 5 days on and either 21 or 28 days off. TBD if she can continue any or all of her alternatives. I will need to ask if this chemo will make her pretty little eyelashes and hair fall out again. I hope not, because she's extra cute right now... but I guess she won't care either way.

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We just had a nice FaceTime call with brother Gabriel. I call him and he says "Hi Mommy! See daddy..." So I show him daddy. Then he says "Hi Daddy! See Jew-yo..." So I show him Julia. Then he says "Hi Jew-yo! Sister! Hi Sister!" and he waves real big into the phone. She's just sleeping so she doesn't know, but it's super sweet. I wish I had all their interactions recorded <3

(Oh, speaking of sibling love, someone sent a really sweet photo gift to my office. It has a picture of Julia/Gabriel, with a QR code and a sound wave image. I assume scanning the QR code brings up an audio clip of them, but the link is broke... so if you sent this sweet gift, try to fix the link <3)

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Picture: Before their shift, a PCU nurse dropped off this adorable Peppa dress for Julia! I love how much they love and miss her. I know they are following along with her progress and hoping for another miracle... they were front and center for the last one <3 And then a few pictures of Julia and her pretty new Peppa blanket =) And I will take a video of Julia now and get it uploaded. I was hoping she'd wake up for a bit, but she seems pretty comfy. I'll get that online in a few minutes.


YouTube: https://youtu.be/aDCEC0sjUuw . . .

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

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 <3





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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!