No major changes today. Vitals are all decent, ET is better than it has been (30s), but oxygen saturation has been on the low side today. She's having a lot of mucus, but it unable to cough and spit like she used to, so they think it's just all sitting in her lungs. Makes sense. So they did another chest x-ray to see what the pleural effusion is doing. It's starting to fill up again, but it's not a ton of fluid yet. The team will meet tomorrow to make a decision on that - might be as simple as unclamping the drain. They started doing some chest PT (which she's always hated) in an effort to loosen up some of the secretions. After the treatments, her oxygen saturation gets better. They're continuing with Lasix about once a day and it seems to be helping with pulling off fluid. Her swelling is about the same, but at least it's not worse. She's never cooperated with opening her mouth, but the weird sores on her tongue might be gone. It's hard to tell for certain, but we don't see anything where we think they were. So that's good. My guess is when she puffed up real bad that one day, maybe her tongue swelled too and she bit it. She's been sleeping a lot, but does have periods of wakefulness throughout the day. She still says her two favorite words, which are dada and iPad, so no changes there. She still likes to hold hands, but she's been saying no to cuddles. She's likes when we sit on the bed with her, but only down by her feet. It's hard to tell what is causing her the discomfort... could be several things. But low doses of pain meds and not being touched much keeps her comfortable. . I guess I'm celebrating Christmas Eve with Gabriel and Aunt Charlene's family. Reed and Julia will join on video from the hospital. I'm debating what to do about Christmas day, after Gabriel spends the morning with his cousins. It's getting hard to have him at the hospital. He's not content in the room, and all he wants to do is get on the bed with Julia, which is definitely not what she needs right now. With Julia's uncertain short-term future, the balancing act of spending quality time with Gabriel is very difficult. Reed would not get any enjoyment out of leaving her room, so I'm trying to work around that. But, Gabriel doesn't lack for love, that's for sure. For a while, when he was with me on the weekends, I would try to get him to know and remember Julia (and Reed). I'd say "Mommy, daddy, Julia, Gabriel... that's family". Which he started repeating. But now he just randomly picks people from my family and Charlene's family, and ends with "that spells family!" Sometimes he leaves both me and Charlene out, and sometimes he forgets himself. He's probably very confused, but at least he's loved. No video tonight, since she's just been sleeping. If she wakes up I'll add one later. . . .
********** ~~ 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): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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