February 9, 2020
Not a great day for Julia. She was just fine all night, but in late morning she had some major changes. Her heart rate went up to the high 180s, her abdomen got noticeably larger, and even the slightest pressure on her stomach would push contents out of her g-tube. On top of the medical change, she was clearly uncomfortable. Lots of grimacing. Of course when everything started, they ran all the typical tests. They switched all meds to IV. Lab work suggested her hemoglobin was dropping, which I guess sometimes suggests an internal bleed. Given that, the high heart rate, and the newly distended stomach, the concern was a bleed in the abdomen. Or possibly the pleural effusion near her heart was filling up, or even a new effusion surrounding the heart. But x-rays and ultrasounds showed nothing different. The fluid coming out of her drains was no different in color (suggesting no new blood). They put a tube down her nose to suck out the contents in her stomach, and the new swelling was relieved quickly, but with no change to her heart rate. They added water to the balloon inside her g-tube (to seal is better), and that helped the discharge immediately, but again, no change in heart rate. Extra fluids didn't help. Albumin didn't help. Her blood work didn't suggest she needed blood. Clotting factors were normal. No fevers. Infection tests were all negative. So then they move on to pain. Her regular dose of Morphine didn't help, so they switched back to IV and gave her some more, with no improvement. Then they doubled her dose of Morphine with no improvement. Heart rate was sustained 193 for several hours. They added Fentanyl and she finally stopped grimacing, but her heart rate stayed at 190. She looked really tired, but she couldn't seem to fall asleep. They added Ativan and it finally knocked her out. And, while pain management was our top concern, we're not sure all her grimacing was due to pain. She grimaced when I sang her songs... pretty sure I annoyed her (can't blame her). And she grimaced when they listened to her heart (which doesn't hurt), and when they cleaned her teeth (which doesn't hurt). So it was likely a combo of discomfort and aggravation. So, as is usual lately... no one knows. They've done all the things and gotten few answers. At least they've ruled out some things it's not. All other vitals have remained solid all day. They don't believe it's a brain hemorrhage due to her neurological status remaining unchanged (same amount of alertness, eye tracking, grimacing, etc.), but I asked them to at least reconsider with her team, as I understand her shunt might make a neurological exam an ineffective way to determining bleeding. As a lot of the symptoms one would see with a brain bleed are due to pressure build up, but pressure won't build up, because her shunt regulates it. That is how her "massive" hemorrhage in December went undetected until her regularly scheduled MRI. They would not be able to do anything about another hemorrhage, but at least we'd know. . So, right now she's still sleeping, heart rate has come down to 171, and she's no longer showing signs of discomfort. All they can do is keep an eye on it and hopefully things settle down over the next few hours. ~~~~ In other news, I want to give a huge shout out to @annahblaire on TikTok. We got in touch with her, and at 16, she has done a fabulous job moderating her super-viral Julia video! She was up until 3am getting a handle on everything, and she's posted a followup video (with comments disabled just for her sanity). She did amazing - with both the initial video and its unexpected popularity (6 million views) <3 In the comments yesterday, it's clear lots of people have some strong feelings about TikTok. Many asked why I just didn't have the video removed. Even though I was nervous about not having control (being as viral as it is), I wanted to give annahblaire the chance to do it, because Julia's story was reaching an entire new demographic on a platform they understand. Lots of young kids. Lots of teens. And you have to wonder... did Julia just inspire the person who will go on to finally cure cancer? . If you want an emotional 10 minutes, watch some of the "Duets" that have come about from Julia's TikTok - I will link them in the comments (it will take a minute after posting since I need to do them one at a time). A Duet is a side-by-side video, with the original video (Julia's video) on one side, and their new video on the other. They often add their own comments and thoughts. In this case, it is reactions of people watching Julia's short story for the first time. The emotion clear on their faces is something we're all very familiar with. There are some really sweet ones. Annahblaire did a great job and her TikTok is having a major impact <3 . No actual video. Julia just didn't look great today.
TikTok links (you should be able to watch in your browser. If you're on your phone, you might need TikTok app [just download then delete])
There are... dozens and dozens, and they keep coming. If you have the app, just search for 'annahblaire', and they are all listed on her page <3 . . .
*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
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