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December 11, 2019

Julia's procedure this morning went well. They got the more permanent drain in. So far it's drained 700ml of fluid and counting. Since she's losing so much fluid, they are giving her extra through her IV. Her heart rate was pretty high, and extra fluid brought it down, but it also puffed her up. So they might need to back off a bit. She was sleeping comfortably on her right side for a while, and half of her face got so fat that you could make indents by pressing on her cheek. They shifted her over to her left side to hopefully even her out. The PICC line is still in, so no improvement with her left balloon hand yet. They wanted to keep the access for 24 hours after the procedure just in case of emergency. And from what I gathered, they would have preferred to assist with the dissolving of the clot prior to removing the line, but decided against using the med due to her stroke history. So I guess hematology and more ultrasounds need to be involved before they determine it's safe to pull the line. They don't want to send the clot somewhere bad, like her brain or heart. So the plan is to possibly remove it tomorrow. But despite her puffiness, she is already feeling better. After she woke up from sedation, and got some rest, she is already moving her right arm way more than she has in several days, maybe a week. She's nodding and shaking her head more. She's kicking more. Even with a splint on her right arm for the IV, she's able to lift the hand to her face and control her iPad better. More smiles. So again, major improvement immediately after draining. Her vitals are all solid. They've weaned her back from sedation settings and she's handling it well. So they're just trying to find the sweet spot with the extra hydration vs what her body might be losing from the drain. And hopefully tomorrow they can get this PICC line out and we can see some improvement in her balloon hand. ~~~~ I stayed home today. Hopefully in the next day or two the coughing/sneezing can get under control so I'm comfortable wearing a mask. Seeing how this virus knocked out Gabriel, no way am I risking Julia. So far Reed feels fine. Gabriel was feeling better during the day, but I think he overdid it with the playing, and got pretty grumpy again at night. He still has only had a few bites to eat here and there, but definitely on the mend. ~~~~ Picture of Julia and Gabriel from when he came home from the hospital. So he's a few weeks old, and she had just turned one <3 In Julia's current pic you can see she's quite puffy. No new Julia video tonight, since she's just sleeping, and you can practically hear Reed roll his eyes when I ask him to "get one anyway for Facebook" (lol). . But it's my dads birthday today, so I'm adding one of him and the kids. This was shortly after we found out he was sick. Before he was given official news, I did my own research of what melanoma spreading to the brain meant. Then I read a bunch of articles on how to handle the loss of your parent. I saw that many people wished they had the chance to ask their dad questions. About all kinds of random things. Favorite memories, dreams for the future, secret hobbies, completely random questions just to see how they'd react, etc. So I copied down everyone's questions, and I started asking my dad and filming his responses. I think he knew what I was doing, but we never actually talked about it. He LOVED giving his opinion on things, so he enjoyed it. We had to 'babysit' him many nights after his brain surgeries, and on nights I'd have friends over, they'd all ask him weird questions too. I have tons of videos of him thanks to this suggestion <3 So the one in the comments is just a short one of him giving advice to Julia and Gabriel (you can see the big scar from his first (of four) brain surgeries in a headband pattern on his forehead). He thought Julia was going to grow up to be pushy. Like her mommy <3 . If you're a scotch drinker, have a drink for my dad. He gave me his bottle of Macallan 25. So I had a glass last night. It's nasty. I know he was laughing at me as I struggled through it.


YouTube: https://youtu.be/XkRVIx433PA . . .

********** ~~ 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: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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!