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January 11, 2020

Julia is stable and comfortable. I'm updating a bit early tonight since I know people are waiting. Last night I was doing a few extra updates to the nightly post, but I was only posting those on my personal Facebook page (so her Facbeook page, GoFundMe, and website don't see those). Our position last night was "could die within 24 hours if something doesn't change". They were able to make some changes, so I believe, at the time of writing this, that she's "OK" for the immediate future. And 'immediate' being like... maybe half a day. Maybe several days. Maybe a week. We really have no timeline. But she's WAY better right now, after interventions, than she was yesterday. . So to recap what happened throughout the night: They decided to insert an abdominal drain to attempt to relieve the pressure. This had been discussed, but not done previously, because it was not expected to be curative, or extend her life in any meaningful way. An abdominal drain is not comfortable; slightly more painful than the chest tubes she has. The fluid was in random locations. Up until yesterday, all organs, minus bladder (which they had a solution for with the catheter), continued to function. And they wanted to give a few more medication-combo attempts before doing something invasive. But her stomach continued to swell throughout the day, putting critical pressure on her lungs and kidneys. This caused the kidneys to stop working, which can quickly be fatal, and is what prompted the "24 hours if we can't fix" comment. She is not a candidate for dialysis with her possibly-active brain bleed (as thinning the blood to run through the machine is something they do). The big concern yesterday was a combo of her very low blood pressure (50/30) and now non-functioning kidneys. With a blood pressure this low, they are very hesitant to give opioids for pain relief (Morphine / Fentayl), as these drop your blood pressure. And because she was in renal failure, benzos (anti-anxiety) meds were off the table. So we were in a position where she was "very likely" uncomfortable, possibly considerably, but typical paid meds could have been the final straw. So an abdominal drain was decided upon, to hopefully get her blood pressure under control, which would allow for better pain management. As a bonus, the relief in pressure might allow her kidneys to start producing urine again, as an ultrasound revealed the most likely cause for her kidney failure is the blood flow from the heart being pinched off due to swelling. In the position we are in, it is very much on your mind whether you are doing things "for her" or "to her". In order to get pain relief, we decided the abdominal drain was the way to go, and the doctor agreed. . The procedure is just done bedside by the attending. It took about 30 minutes. I asked how you pierce a needle into something under so much pressure without the contents just spurting everywhere. He said... there is lots of spurting. That's how they know they reached the fluid. Gross. The procedure went just fine. They gave her light sedation and pain meds, and her heart rate didn't budge (solid 140), suggesting she felt nothing. They immediately drained 100ml and then capped it. The concern with draining too much, is they could severely affect her blood pressure in a way they can't recover, as while this fluid isn't where it's supposed to be, it's still part of her body. So they've continued to open and close the drain over the course of the day. When it's unclamped, the fluid flows out super fast. It is mostly a yellow color, rather than the red, fruit punch color coming off her lungs. . After the procedure, throughout the night, it was pretty... intense. CHOPs team is nothing but professional, so it was hard to get a real read on what exactly what going through their minds; but for a long time, both attendings and the follow (so three doctors), as well as a revolving-door of nurses, were in her room. I felt like I was watching some medical drama on TV. Which I can only imagine, because my medical anxiety has never allowed me to watch those shows. Except House. Dr. House reminds everyone of Reed. So we liked that show. (Actually, everyone also says Reed reminds them of Dexter... which may or may not be concerning.) Anyway. There was some exchange going on for several hours, and Reed and I were just quietly sitting and watching. Several (maybe many) nurses from CHOP follow this blog, but they don't comment or talk to me about it, I assume due to some sort of privacy/patient confidentiality thing. But one did tell me months ago that it was interesting reading a 'parents perspective': what they perceived to be big deals, that medically might not be big deals; and what things being said concern them, which might not actually be concerning. I guess it's an interesting insight to nurses, to read 'my report' on the happenings of the day after their shift. So, this is my parents perspective, and who knows how close it is to reality. My assumption is her doctors were mostly concerned about her blood pressure. It was a very 'active' scene. The doctor would ask the nurses to up some med or fluid, and they'd do it immediately, and half-way through pushing it, he'd tell them to back off. Then ask for a different medicine (maybe something to counter it, maybe something in addition?). Then he'd watch numbers more, and then have them open the drain and rapidly release several hundred ml's. Then he'd (randomly, to me) tell them to clamp it now, and start pushing a different fluid. But then he'd tell them to stop. He'd consult the monitor for other meds, and they'd talk about whether or not they were options (usually considering BP or renal failure). It was 'calm', but it seemed really time sensitive. At one point he seemed angry that a med hadn't gotten up from pharmacy immediately. And sometimes just two blood pressure draws, taken two minutes apart, above some threshold, were enough for him to take a different action. But, with my limited non-cancer medical knowledge, I have no idea how much danger she was in during this time. I just know she had a lot of undivided attention. At one point I watched her heart rate climb 60 points over the course of about 30 minutes. It went from 140s all day to 210s. I wasn't asking a lot of questions, because I wanted them to focus on Julia, but just from hearing people talk, I assume they gave her epinephrine in an attempt to keep her blood pressure up, and that made her heart race. But of course, the spike in heart rate instantly makes everyone concerned she's experiencing pain, so the pain med talk starts, but then blood pressure still too low... it felt like talking around in circles sometimes. Then they would try to counter the racing heart with fluids, but ...kidneys not making urine, so where is fluid going to go. The doctor kept personally recycling her BP cuff, even though it was already going off every 3 minutes. To me, it looked like her blood pressure was all over the place (low, always, but very not-steady). I have no idea if that's what was concerning him or not. Out of the blue he said he wanted to place an arterial line. That's an IV in the vein in the underside of your wrist where you check your pulse. He said that allows them to get blood out, for labs, but more importantly, it gives a reading on her blood pressure with every beat of her heart. So of course we signed consent and left the room. I think by now it was the middle of the night so we went down to the cafeteria and got soup. Odd thought, but I remember every sound of laughter in the cafeteria really made me angry. Like, the whole world didn't know Julia was upstairs fighting for her life. . Anyway. The line went in fine and now her live blood pressure is on the monitors. They switched to steroids for a while to try to control her blood pressure. The concern continued to be pain management with a low BP. Also, the swelling all over the body, made it difficult to place and keep IVs. I believe they said some of the pain/BP meds they want to use are (did they say 'caustic'?) to smaller veins, and it's hard to keep a lines open. So the conversation of a central line came up. This would be a line into either her neck or her groin, and would allow them access to a much larger artery that can handle these meds. Pain scale, the procedure would be pain-free, but the aftermath is more painful than the abdominal drain, which is already more painful than the chest drains. The decisions you need to make when your child is in this position are absolutely horrible. I do not want to do things 'to her'. I have no false hopes about how things will turn out... but I want her to be pain-free. They said no decision is the wrong decision, but a central line would allow them to manage her blood pressure, but more importantly, actually give her pain relief in the form of IV fentanyl. We figured... if she could finally get on fentanyl around the clock, she likely wouldn't feel the discomfort of any of the drains. So we approved the procedure. . That line went in to her right inner thigh in the afternoon. The procedure went fine, her vitals didn't budge. She is now getting some medication to help handle her blood pressure, and more importantly, IV fentanyl (that's the good stuff). Over the day, they have drained over 1200 ml off her abdomen, and have even been able to go down a bit on vent settings due to the pressure relief. Nothing to write home about, but they were very unhappy with the amount of pressure they had to give yesterday ("dangerous levels"... which in my mind translates to "lung popping", though I don't know if that's physically possible). So they came down a bit and she's tolerated it nicely. As an extra bonus, some urine has started coming out the catheter. Whereas yesterday there was zero urine production all day long. The doctor explained that "kidneys are stupid" and sometimes they can take some time to start functioning again after pressure is relieved. But some urine right now is so much better than no urine. With the beginning of pressure relief, and blood pressure meds, and pain meds, her blood pressure is 'cautiously' under control. It's been around 110/60 for many hours, which is perfect. The doctors have definitely made us aware that we haven't 'fixed' the underlying issue. She still has extremely aggressive cancer which currently isn't responding to chemo. But should the cancer not be a factor, nothing she went through recently is not survivable. The kidney failure due to pressure, the extreme abdominal swelling, the lung pressure, the drains, the IVs... all of that "could be fine" if the underlying cause was addressed. They also mentioned, not conclusively, that there are early theories that she is fighting an infection. This infection might have been what pushed her body over the edge so rapidly. I'm not sure yet what infection they suspect, but she has cultures of everything running, and she's back on several broad-spectrum antibiotics. They might be leaning toward a yeast (which has been a concern for several weeks now, with the red ring around her belly button). . So... a ton happened in the last 24 hours. She has 3 new Frankenstein attachments: abdominal drain, arterial line, and central line. Add those to her preexisting trach/vent, g-tube, right chest tube, left chest tube, foley catheter, and two IVs... As much as we'd love to snuggled with her in bed, she's not really a snuggle candidate right now. But most importantly, she is on a combination of g-tube Morphine and IV Fentanyl and we FINALLY have a content baby. She has opened her eye MANY times, and even focused it daddy (and mouthed, we assume, 'daddy'), and then actually watched Peppa <3 Yesterday we got nothing out of her eye. She would open it, but it just stared straight ahead. So having some eyeball time today is super awesome. As bonuses to 'pain free', the pressure relief and potential urine output might get her into a much more stable position, and keep her around long enough to give this chemo a shot, which could start as early as Monday. Again, no high hopes for that, but as long as she's comfortable (which she definitely is now) then... whatever. The ultrasound of her heart revealed her heart is perfectly healthy and is doing a great job compensating for all her other organ issues. I guess that's not surprising <3 This baby is pretty much all heart. ~~~~ I came home to get clothes for Reed and I, because we both stink. Stress makes you smell bad. I made it like, five feet in the door before falling asleep. Now I'm just doing this early update while waiting for laundry to finish, because I apparently I haven't washed clothes in a month. Reed sent me a picture of her belly, and it looks... better. Already. If it gets to a point where her current belly is not crazy large, I will show a comparison between the two. I just didn't want to share the gigantic belly if there was no option to help her. So I might get that picture up a bit later. It would be on this post. I try to stick to one single nightly update, just so people can be sure they have all the information. If there are critical updates, I will add them to the nightly update, in both comments and edited on the original post. I usually only do these sub-updates on my personal Facebook page. Please feel free to follow to get those. Obviously, all info will make it into the next post, so you won't miss anything. ~~~~ Yesterday I had written a bit about why I love these "praying for Julia" pictures from your hometowns so much (specifically, "Praying for Julia, #TeamJulia, and your location, written on paper, and held out in front of you with a nice picture of your hometown or local landmark visible behind it). And it mostly had to do with me really liking this glimpse into your life, since our relationship window is kind of one way. You guys see into my life every day, but I don't really know any of you. I wrote a lot, but this post is already way-long, so I didn't include it. But if you are so inclined, I absolutely LOVE these pictures, and plan to use them in a collage for the cover of her legacy album. Cousins and brother wanted to participate (but they are IN the photo... which is not how it's supposed to be, but I guess I will give them a pass, because most of them are pretty cute.) Anyway. In the scheme of things... not important... but asking for more of these pictures from around the world is where my mind was yesterday before the bad news. So if you want to participate, I would love that <3 That original post was two days ago on the 9th if you want to see examples of what I'm looking for. ~~~~ So... better. Julia is comfortable and watching Peppa. I will post important updates if they happen tonight. Maybe a picture or video when I get back to the hospital.

Video added, YouTube: . . .

*********** ~~ 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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