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January 12, 2020

Julia has had a pretty good day! First of all, check out the comparison picture. I took this 'before' picture on Friday, mostly just to have it... of course we expected the worst, so I had no intention of sharing her in such an awful state. (I know I had mentioned a few times asking if things could 'pop'... this is why.) But now that it's been drained, the comparison is super impressive. They've (so far) pulled over 3 liters of fluid off her abdomen. WOW. And it continues to drain when unplugged. Her belly had started getting big weeks ago, but it was unclear what exactly it was. Ultrasounds / x-rays showed enlarged organs, lots of constipation, and 'minimal' excess fluid. There was certainly some free-floating fluid, but nothing crazy, and it kind of seemed to be in random pockets. Wednesday we started noticing it swelling quickly, and over the course of Friday, it enlarged quite a bit more. Which is what (apparently) stopped her kidneys from functioning and put major strain on her lungs. We still have no concrete answers as to why she's swelling. "Cancer" is likely the cause. It's on her brain stem and all down her spine, so weird things are expected to happen. This drain CLEARLY was a major comfort factor, so I'm super happy it was done. It has also allowed her kidneys to start functioning again! She's producing an 'almost normal' amount of urine again =) She hasn't done that in about two weeks, and Friday she hadn't produced a single drop. I think they want to see 12-15ml per hour on average, and she's been between 10-20ml. So pretty close to perfect. Also, with the pressure off her lungs, they've gone WAY down on her vent settings. Pressure support is nowhere near 'dangerous' levels anymore, and they've bumped her extra oxygen all the way down to 21%, which is what you and I breathe, so 'room air'. (At her worst, she was at 60% oxygen and was still struggling to maintain saturation.) Her blood pressure has been steady enough that they've started weaning meds. It's fallen a bit as they take meds away, but nothing like it was. It's still very OK. They believe her arterial line got a clot, so they removed the line and are waiting for an ultrasound to check. But currently there are no plans to put it back in. She had a 101 fever once today, but Tylenol and cooling down the room took care of it. They stopped wearing the infection garb, and so far nothing has grown on her cultures... so they're still not sure if she's fighting something. That has been a big unknown for several weeks now. It's possible just her body responding to cancer and / or whatever sort of changes draining this much fluid can do. She's also been off feeds since Friday when this all started (clearly she was SO swollen that they were concerned about putting anything more in). She's been on maintenance fluids, nothing crazy, and today they started a fluid with nutrients. I think if everything holds steady, they will try her formula again tomorrow. The only note I've heard is she's a bit low on potassium, so they're giving her that separately. . She's been SUPER comfy on her IV fentanyl. Heart rate in the 120s, and just really relaxed looking. Her left eye has been open ALL THE WAY for quite some time today! We haven't seen her eye open that much since before Christmas. She definitely has periods of 'zoning out' where it kind of stares forward (which is the state she was in all the time the last few days). But she can snap out of it and pretty much look all the way around. It does seem to tire her out to hold her eye at a non-straight position, so it will drift back eventually. But she can find us walking around the room and locate her iPad no problem again =) And she's moving her mouth again. It's still not clear yet what she's saying, by watching it, but we know it's 'dada'. She will start mouthing while he's on the couch, while looking over at him with her one eye, and then when he gets to her she stops. If he asks "Can you say 'dada'?" she moves her mouth the same way. If he asked if she can say anything else (including 'mama'!) she does nothing. And if he starts to walk away she'll move it again. So... we think the intention is pretty clear. . This is all really good news, but the underlying problem still has not been resolved; so until we find a treatment she responds to, we're really just getting a break right now. But the interventions on Friday seem to have rewound time by over a month as far as comfort and ability. ~~~~ I added a video to the comments late last night, if you missed it. I'll try to get a new one tonight if she wakes up, she just zonked back out after an HOUR of cuddles and watching Peppa =) (I added it to her website too, if you missed it it's in yesterday's post now) Oh, and on Saturday a few of her old PCU nurses stopped by and dropped off this Angel of Healing pin. I don't know if they read my update or if word just got around the hospital that Julia was in a bad state. They all love her so much. I really hope we can get back to that unit someday <3 . . .

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: Car Magnet:

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 2018. You can find them all on my Facebook page or Julia's website <3

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1 Comment

Jen H
Jen H
Jan 13, 2020

Praise God!!!!

Wow that is a lot of fluid drained.

Keep fighting baby girl! We are fighting for you as well with our prayers to the Lord!!!

He hears us!

Love and hugs and smiles

~The Hoin family

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