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November 22, 2019

(Things are fine. Well, "fine".) In the middle of the night the nurse got concerned about Julia's increased heart rate and respiratory rate. Julia seemed uncomfortable and was clearly working more to breathe. They did an x-ray and ultrasound and determined she has a pocket of fluid around her lung. It is between her lung and her chest wall and is on the right side of her body. It is pressing into the lung, likely making it hard to breathe and possibly contributing to her exhaustion / weakness. They said it appears to be a single large pocket of fluid, rather than a bunch of little pockets, which is apparently the better of the two possibilities. Again, the first question is "why". Why is there a random pocket of fluid near her lung. They said a common cause is a bacterial infection, but she doesn't show any other sign of infection. So it's likely "progression of disease". Which is not unexpected with a brain stem tumor. Lots of crazy things can happen. Several people have noted that she looks more swollen recently, so it is quite possible she is starting to retain fluid. This happened last January as well when things were not great. So the first step they're taking is re-positioning her regularly in hopes some or all of it will re-absorb into her body. Since her shunt surgery.... however long ago (a week? my time is all off), she has stayed mostly in the same position. It's hospital policy to change positions every few hours, but Julia has made it very clear she wants to sit just like she is. I think we all are trying to walk this fine line being "what's best" and "what the very sick toddler wants". It's very difficult to turn her onto her side, watch her shake her no finger and cry, and then just leave her there and walk away. You know? Like... what if tumor growth on her spine is causing pain when in another position? So we have all backed off on the moving her every 2 hours rule. But... I don't know if a perfectly healthy person could sit in the same position for a week and NOT have water retention, especially directly following several surgeries. So that's the first step. Today they have re-positioned her regularly, and she has tolerated it well. They even got her back up in her chair for a while and she was fine. She seems to be uncomfortable during the move, but settles down once in her new position. I guess they're going to do this for a few days and see what happens. Other options include trying a diuretic to see if assisting with moving water through her system helps. Or there is a surgical option, which sounds like some sort of drainage tube (unclear on whether this is a one-time sort of drain thing, or a more permanent tube thing... I wasn't there for the discussion at rounds. I assume tube?). Obviously they want to try the least invasive procedures first - no one is excited about putting her through another operation. . Vitals have been.... decent. Her breathing is definitely affected. I mentioned she is on her vent full time now and never doing the HME (that's where she's breathing on her own through the trach). A few times today they had to bump her oxygen up a bit to provide some more assistance. She hasn't needed supplementary oxygen since like... spring. Not a crazy high amount, but something was required to keep her oxygen saturation up. It's been at 25, for the medically-inclined Julia followers. Other than that, she continues to look comfortable, she's tolerating all meds, her sodium is back up to a good level, and she has not vomited in a week or two. So we're hoping she hangs on, remains comfy, and gives these other chemos and medicines a chance to work on this cancer. ~~~~ Pic tonight: I had a wonderful time with my big boy tonight <3 I miss him so much. And when I FaceTimed him earlier today, he was VERY unhappy that he had big boy pullups on, instead of a diaper. I thought the moms out there would appreciate him being adorably upset. He kept grabbing at them and saying "stuck" with a big ol' pouty face. I guess Aunt Charlene (and her mom) are starting the potty training... Video in comments: attempting to get a laugh out of Julia. I think if I squint REALLY hard I can see one... but she mostly looks like she's just tolerating me. At least she's comfy <3

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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

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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