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November 12, 2019

Well, we've been upgraded. Downgraded? Downgraded in Julia's clinical presentation, Upgraded in expense of room. We're back in the fancy PICU. Long post, lots of info. ~~~~ Last night, Julia appeared to have slept really well, though as I mentioned the other day, we're not convinced she's actually "just sleeping". She seems way too out of it to be sleeping. But this morning when it was time to get up, she just couldn't. She tried. Her eye was open for a few seconds at a time, and she was able to squeeze a hand briefly, but she was just sooooo tired. Also, both hands appeared to be stuck in fists, which was new. She even tried to push her blankets off, but couldn't (or didn't) unclench her hand. And possibly totally unrelated, she had a bit of a nose bleed. The hope is that's just from being overly dry, but mixed with everything else, blood from the nose was concerning. Obviously none of this was a good sign. Given that she's had two of these episodes recently, they decided to send her back to the PICU and get another emergency CT scan. Today's CT scan showed "obvious enlargement of ventricles". This happens when there is pressure build up somewhere in the brain. The actionable theory is that she is experiencing a shunt malfunction, which can happen. (As a reminder, the shunt is the bulge on the side of her head, it was placed last December after a brain infection lead to pressure build up, which lead to a stroke). The shunt's job is to drain... brain juice... through a tube that runs down her spine and into her abdominal cavity. If something stops working, pressure can build up, and weird neurological stuff can happen. Besides a malfunction, there could be a pinch somewhere in the tubing (possibly from tumor growth). So, given that pressure was now seen on a CT scan, and her clinical presentation was way off, the first step was to relieve the pressure. The hope was to get her into the OR, remove the shunt, see what's going on, and then go from there. But there was a scheduling conflict so they had to do the procedure at the bedside. They knocked her out real good - two sedatives and a paralytic - and neurosurgery drilled another small hole through her skull and put in a catheter. Now her brain juice is draining outside of her head into a collection basket. This exterior shunt procedure was also done last December, before the permanent, interior one was put in. They could not check the shunt, as that requires the OR. They also mentioned the possibility of this pressure build up having caused / is causing seizures. They are watching for those and have a plan in place if needed. But so far nothing obvious has been observed. The plan is to "see what happens". If she gets better, then the shunt is likely causing the most recent decline (we're talking about the weirdness over the weekend, not the eye being closed or anything like that - which is almost definitely tumor related). This external drain is not a long term solution. She needs to be very still (which clearly won't happen if she's awake and capable), and the bed needs to be a certain height and everything. So if they do believe it's the shunt, she will likely go to the OR in a few days for it to be replaced. The procedure went fine, her vitals remained solid. Neurosurgery commented that given her behavior, they would have expected MORE pressure to have been built up, which wasn't the case. They said sometimes if the pressure is really bad, the second they get something in there all the brain juice just comes flying out. That's not what happened. A little came out, but not a ton. So... who knows. While they were in there, they grabbed some fluid to test for infection. They don't believe that's what's going on, but they have been fooled before. ~~~~ I talked to the on-staff oncologist about what they really think is happening. He said he is very hopeful this is shunt-related. Her weirdness is textbook shunt malfunction. He said he does not currently believe this is any sort of rapid tumor growth that caused the behavior we're seeing, though since CT scans don't do a great job of looking at her tumor, he can't say for certain. I want to be hopeful too that it's the shunt, but the timing is just a bit too uncomfortable. We'll see. He stopped chemo for tonight, just due to her being so off, but the hope is she gets back to her baseline and everything can resume tomorrow. (Oh, she got her first dose of her second oral chemo last night and promptly puked it all up - her chemo goes into her g-tube (stomach) rather than her j-tube (intestines).) ~~~~ Child Life helped pack up all her stuff from the PCU. Everything clearly sentimental came with us (all her colorings, room signs, etc.) I helped go through the books and toys and a lot has been donated to the PCU - just duplicates and things she never really showed an interest in. Even so, five bags of stuff and two tupperwares full were transition to the PICU room. Also, we finally made all the trips to and from the car and brought up the iPad stands everyone (unintentionally) helped donate. They are VERY thankful! Every nurse I talked to had a story of how they've had to MacGyver ways to keep an iPad in position since they are always so short on stands. So they will get these all seven assembled and take a picture. One newly built one will come to Julia and replace the broken one she's been using forever <3 Oh, and I see Julia's PCU room already has a new occupant. They sure do move quickly... those two private rooms are in such high demand. We did get a private room in the PICU. No couch though. Just a small chair, but I think it kind of folds out. Lots of people have recognized Julia (and Reed) and stopped in to say hi =) They have commented on how cute she looks with no hair, and how fat she's gotten <3 ~~~~ So, right now she's still post-op and hasn't really woken up yet. Given the brain stuff going on, they are doing neurological checks every hour - that's where they shine the flashlight in her eyes to see what happens (among other things). Her right eye is not responding, as expected, but her left pupil is also "very sluggish", which is new. This continues to be the case even after the procedure. I don't like that at all. Her left eye is her good eye, and the only time it got slow was last January when she went into coma. So... we'll see how that goes. The hope, of course, is that she wakes up, and we can get back to treating. And if she does wake up, she has a much nicer view here. She couldn't even see the windows in the PCU. Now she has a wall of windows. It's not the most fantastic view, but at least she will be able to see sunshine and ... apparently snow, which I guess happened today. ~~~~ So we've gotten minimal responsiveness. Already better than earlier today (she has opened her eye for a few seconds, held out her hand for Reed to hold, pointed at Reed, and asked for her iPad -- none of which even slightly happened this morning). Neurosurgery was thrilled to hear of her more normal behavior, even if it was just for a moment before falling back asleep. I'm very happy she's still "in there" too, but I'm hesitant to think things are magically all better with the shunt. Yesterday we had hoped that Sunday's episode was a fluke, but apparently it was not. They had to hit her with some more Ativan to do a follow-up CT scan to confirm placement of catheter. Since then she has lifted her hand enough to wipe her mouth, and has attempted to reach up to the new annoying thing she no-doubt feels on her head. She even managed to reach the IV in her foot, but was too weak to pull on it. So a bit more stirring. These nurses are about to meet Ms. contrary-I-don't-like-things-attached-to-me Julia. Hopefully she doesn't yank out her brain tube. ~~~~ I don't know if people will find her exterior shunt disturbing (there is some blood and iodine around a 2-inch long incision), so I won't put a close up shot of that here. I think I got a video of her starting to stir, but it's not playing when I download it to the computer. I'll see if I can get it uploaded to comments but it will take a bit. If anything else happens I'll update the post tonight. . . .

********** ~~ 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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Britt Randall Harvey
Britt Randall Harvey

ahhh you little Warrior of the Light Princess.... may you go from strength to strength, hoping and praying for the very best to you. Praying for an abundance of healing and sending you love and light thru the airwaves, all the way from South Africa... Strength and courage to your family precious princess,,, you have the strongest mommy anhd daddy and brother in the whole wide whirrrrrlllllld! Love and blessings *mmmwah*

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