Another very sleepy day. Minimal awake time, though we think at one point she did try to move her mouth to say dada. But she's just been sleeping comfortably with a really decent heart rate. They've also come back down on her oxygen support a few times (currently at 25%) and she's doing fine. We got some answers on the new concerns. She is fighting her 2nd UTI this month, so she will finish up this course of antibiotics in a few days. Then she'll start on a regular maintenance dose since her body seems susceptible to infection right now. The 'concerning cloudiness' in her right lung (non-pleural effusion lung), thought several days ago to possibly be ventilator associated pneumonia, is now thought to be small pockets of lung collapse. The solution for this is to do regular chest PT and to rotate her more fully (they do move her every few hours, just not fully onto her sides as that has been causing discomfort, especially with the chest tube). So as of now it is NOT suspected to be pneumonia. They also noted that the pleural effusion might appear to be less than when last visualized. The NP read the official doctors notes on Julia's belly ultrasound, and said there does not appear to be an accumulation of fluid at the end of the shunt, so they have no reason to suspect it's a CSF absorption issue. What they do see is a LOT of poop. Like, every loop of her intestines is packed, and they're all swollen from the pressure. The impression Reed got is they are a little surprised at the amount of poop, likely because she has been going mostly regularly, at a good quantity and consistency. But apparently she is just stuffed full. So other than the fluid retention we are seeing all over her body, the super swollen stomach is thought to be due to severe constipation. She has already been on a regimen to help (Morphine constipated her last time too), but it doesn't seem to be enough; and possibly being exasperated by other areas of her body sort of shutting down due to tumor progression. So immediate comfort care is trying to get things moving and get her all cleared out. Other than that, just a lot of sleeping, and nothing else concerning in her demeanor or vitals. ~~~~ Video in comments of when Charlene and I got down to her yesterday. I just recorded all the things I look at when I arrive, so it's sort of a weird video, but there was nothing other than her sleeping today. I added a sweet video from spring 2018 - so about 2 months before my dad got sick, and 7 months before she did. She's just being adorable in it, and widdle Gabriel is teeny tiny. <3 <3
YouTube: https://youtu.be/Nj-TGzY6FIg . . .
*********** ~~ Julia Adams ~~ ********** ************* Official Links ************* **************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Car Magnet: https://tinyurl.com/y4nxr3lr
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
