January 25, 2019
Day 4 out of 5 for chemo, and Julia spent the day sleeping. Vitals are looking... better. Not sure what to make of that, given her now-normal state of "not alert". Are the improving vitals a good sign? I assume we'd see some sort of increasing wakefulness, even just an eye peeking open, if there was really a positive change going on in her brain. I don't know. I try not to read into it, but it's really hard when we just stare at her all day long hoping for a sign that the scales are tipping.
Heart rate in the 140s again, which is where it's been staying the last few days. Possibly in response to chemo. Her ET is trending DOWN(!) with her new breathing assistance - the mild ventilator support and the machine that helps loosen her secretions. It's been in the 60's all day, with it hovering around 62 now. Which is fantastic since just last week we watched it climb about 1 point every few hours, right through the 70s and into the 80s. There was no sign of it reversing, so something is helping that for sure. And her BP continues to look much better on her new meds: 142/88.
The only new thing to report is that she's starting to bite her tongue sometimes. We don't believe it's swollen, but it seems like her mouth is resting in an odd position with her teeth slightly parted, so sometimes she ends up biting on the tip. I assume it's due to the swelling and her puffy cheeks. It wouldn't be a huge deal, but when that happens she gets a mouth guard put in, and that makes it very difficult for Reed to administer one of our alternative medicines. It's a tar-like substance, and we're wondering if there is any way to get it through her feeding tube. One doctor suggested maybe mixing it with Olive Oil. The tongue issue comes and goes though, so we seem to keep squeaking by and haven't needed to actually try that. Open to suggestions.
I had some questions I wanted to answer... but they're slipping my mind now that I'm writing (please ask in comments - I don't mind answering the ones I see!)
With our picture of Miss Chipmunk Cheeks, I had to share two more beautiful pieces of artwork done in Julia's honor. Seeing what you're spending your time and gifts on is so awesome... I love that Julia is so loved.
And we got our first colored Julia Warrior pages in today. THEY ARE AMAZING. I'm going to start hanging these up and I can't wait to share pictures! I love all the notes written to Julia from adults and kids... I can't wait to get more. She's going to have the most awesome wallpapered PICU room ever =)