January 13, 2019
Julia has had a peaceful day. Lots of cuddles and hand holds. We put the game on the TV and she surprisingly had her left eye cracked through most of it. It's possible it's just the swelling that's forcing it open once in a while, but it definitely looked like there was a few purposeful tracking movements in there. She found me and Reed a few time, and still looked at her cartoons, if just for a second.
Reed and I continue to do what we can around the clock, but we are always very aware of one of her breathing stats (and the look of her breathing in general). Her End Title, or ET, measures the amount of carbon dioxide she expels with each breath, which relates to how well she's ventilating. A healthy individual has a number in the 30s. Over the last few days, we've watched Julia's number slowly rise through the 60s and 70s and now she's hovering around 82. We've of course asked the obvious questions and gotten the typical "everyone is different" responses, but were also told that some people would not be sustaining themselves at this level. And this specific reaction is caused by the location and growing pressure of the tumor, Last week we were told this is the direction she might take. What we could expect if it continues to climb is for her to wake up less and less and sleep more, until eventually...
So that's where we're at. We were happy to see her (possibly) peeking so much today, but that number and her chest movements are just so discouraging =( She still appears to be in no pain at all, and has not received any additional meds. Her morphine continues at the absolute lowest level, and remains there to manage withdrawal as well as be available for any emergency symptoms.
The neuro-oncologist offhandedly asked if we've seen any movement in her hands... (we have not). But it made me wonder if they really expected Julia to not be here today and maybe they're starting to wonder about what the tumor is doing as well. Or I'm just reading into it. Her vitals have not made any positive turn. If they do (if her blood pressure lowers, or her ET starts to fall) I assume they might want to do another scan. But nothing is currently on the schedule. Reed and I are taking advantage of all extra time to give her what we can in the alternative therapy realm.
And I mentioned it before, but I wanted to let you know that I've continued to read all your comments out loud to her. I figured she got bored of hearing her books all the time. [This is directed at Facebook - if you haven't followed us there, please do! The support she's receiving from around the world has just been amazing.] So if you have any prayers, healing words, positive mojo, or love in general, that you'd like her to hear, she will hear it. I heart the comments as I get to them (still a bit behind, but am really enjoying reading so much encouragement to her).
Hopefully our little fighter keeps it up <3