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December 29, 2018

Julia had a mostly peaceful day. No PT on the weekends, so she's spent the majority of the time sleeping. She's probably tired from her 3 days of moving. I spent many hours down there and she didn't really wake up once. She's even getting used to the suctioning, so that's not bothering her enough to get up. So I just stared at her pretty face and decorated her halo.


Quite a bit of gagging today, but not so much vomiting, which is good. They've finally gotten approval to do deeper suctioning, so between that and her coughing so far, perhaps she's starting to clear out all the gunk that's been in her lungs.


A newer... not concern (yet), but, just something they're trying to figure out, is what's causing her heart rate to elevate. It just randomly spikes for periods of time. Last night while she was sleeping it was steady in the 180's. They've been ruling out all the common triggers: pain, agitation, infection, fever, reaction to meds, etc. Sometimes surgery or damage to the brain stem area can affect the body's ability to regulate these autonomic functions, and that's her cancer/surgery location, but they can't find obvious signs of anything. So for the time being, they've started her on a medicine that just lowers the heart rate ("P"-something). Today it's been in the 120's/130's, which they're happy with... but it's clear they're a little annoyed that they're just treating the symptom and not the problem. They're going to keep an eye on it. Other than that, they're starting her on melatonin and are going to start darkening the room at night/reducing visits to try to get her back on a more normal schedule.


As far as I know she will be getting a CT scan tomorrow to get a look at how her brain is doing in general, as far as infection and swelling. I'm not sure if her spine is being looked at, or if they're waiting for Monday's MRI.


So just hoping for good news tomorrow. I'd like the infection to be cleared up and nothing new and crazy to be going on (for once), so we can just move forward!




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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!