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January 2, 2020

Updated: Jan 5


(Picture didn't upload to Wix, so I just picked a generic one. I will try to fix when I get home)


Lots of medical stuff in tonight's post. Julia seems to be resting comfortably, but her vitals are struggling a bit today. Heart rate 170s, respiratory rate 20s/30s, oxygen saturation low 90s with continually increased vent support (pressure support 28 PIP 14 PEEP, oxygen 50% recently upped to 60%), ET steadily in the 60s/70s and I've seen as high as 77. BP 102/56. Temp of roughly 101 on and off today. They just ordered another antibiotic, just because of her vitals. Blood work is being done. Doctors are most interested in her breathing right now. There has been lots of 'hovering' today. All kinds of doctors "just checking" (there are three in here right now, a resident, fellow and attending. Oh, and now an extra nurse. And now a respiratory therapist to switch her to a bigger vent. It's a party). Update: OK, I definitely just ran out of the room. I haven't done that in months. They were switching over to the big new vent, and all the doctors got really quiet and started watching numbers. There were all kinds of concerning beeps and a big flashing red light. I was doing OK controlling my PTSD, but then the attending said something like "I don't like her chest rise", and I booked it. Because that's what I do. I pretty much ran to the other side of the hospital, hid in the corner, and FaceTimed Charlene. She told me to go back, I told her I was waiting for the code blue alarm to go off. It didn't, so eventually I went back. They were all still standing there but they said things were OK. I guess it was just a vent transition that Julia's body didn't really like. OK, back to my previously written update: They did an ultrasound and x-ray of her lungs. The images show a moderate amount of fluid around her right lung (the lung with the drain). The drain is open, and draining, but slowly, so they just put in a sort of draino to help unblock any possible clogs. But the left lung now has 'considerable' fluid around it, which is probably causing her breathing difficulties. A chest tube to drain this pleural space is a solution (band-aid), but the doctor explained that they like to see a large enough space in the fluid to stick a needle, or they risk puncturing through into the lung and obviously creating new problems. The ultrasound does not show any safe places right now, so they don't want to jump into the procedure. So they are going to switch her back to a fancy ICU vent (did that). She was downgraded to a home-compatible vent many months ago. This ICU vent gives them much more information, with graphs, and statistics, and all kinds of useful stuff to figure out what's going on. So they're going to watch her throughout the night, and see if they can get a handle on it without doing the chest tube. But if they find they need to keep giving her more pressure and/or oxygen, they might have to do the procedure tonight. I noticed a pink splotch around her belly button about a week ago (no drainage, and this looks more 'belly' related rather than 'bellybutton' related). But it started spreading and getting a deeper red. Yesterday they circled it with a pen, which you can kind of see in the video, just to watch what it's doing. Today it's slightly smaller, but still just as red. No one really has any idea of what it is. It's possible it's just due to prolonged swelling. Still no enema, but they are running her white cells now to see if they are high. If they are good, oncology might make an exception. My understanding is nothing rectally while on chemo (temps, suppositories, enemas, etc.) due to the risk of puncture. That sort of infection would be very bad with low white cells / weak immune system. Her right leg is cold again; colder than the other day. It's like ice from her foot up to mid-calf. I've tried gently rubbing it and packing it with blankets, and nothing seems to get the temperature up. She had a full ultrasound done to look for clots, and all arteries leading to the leg look fine, and the pulse is fine. The doctor said he was going to go look at the ultrasound himself (rather than just the report) to see if there might be a clot in a more unusual place, like the ankle. So, not a fantastic day for her. Luckily she looks comfortable, so hopefully she's in a nice deep sleep and her body is just having trouble without her being aware. Oh, and we thought we had seen the last of her eye being open yesterday, as she hadn't opened it all night and morning. But this afternoon during a diaper change, she popped it open and gave the smallest 'dada' lips. So, she's still there and still holding on. She's just very sleepy. Hopefully the breathing can get under control tonight. ~~~~ Pic of her with her fancy new vent. Video in comments (longer video and hospital internet, give it a few minutes).


YouTube: https://youtu.be/uQFGqSHkMjg . . .

*********** ~~ 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://tinyurl.com/y55lh988 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!