December 20, 2019
A new normal day. Lots of sleeping, minimal interaction. Vitals are decent. Heart rate 130s, oxygen saturation high 90s, ET continues to creep up and has been low 50s, BP 110/53. No fevers. She's gotten Tylenol and Morphine several times today and seems to be very comfortable afterwards. The IV in her right hand is still good, but it's starting to 'weep'. So some clear fluid mixed with a little blood is starting to come out, likely due to all the swelling. It's just something that happens. No one is really surprised. Her face is even more swollen than yesterday, it's just super puffy and tight. Throughout the night they became happier with her urine production. She is completely unable to pee on her own, but at least she continues to make it (that started to be a concern yesterday). But additional bladder scans showed a decent amount of production. Due to her swelling, they gave her a single dose of Lasix this morning (this is a water pill used to treat water retention). It seemed to have an effect, and the next bladder scan showed 375ml of fluid (they want to see 150ml to drain with a catheter). So while I don't necessarily see a visible improvement, at least they were able to pull some of that excess water out. Lasix might be a daily thing; they're still monitoring and discussing best options. Lots of people ask about her organ function, blood work etc. She is not on hospice, so they continue to monitor everything very regularly. She gets a variety of labs done throughout the week to check overall blood counts and look at things like liver and kidney function. So far everything is working great. She only has movement in her left eye, her mouth, and her right foot. She does not like to be touched anywhere right now, but seems very content when she's left alone. She seems to enjoy us rubbing her legs over her covers, so we're usually sitting on the bed just holding onto her feet or something. We very carefully reposition her arms, and try to elevate them once in a while on her collection of Big Peppa dolls, just to try to help the water retention, as lack of movement alone can be a major cause. . Our old PCU doctor stopped by and I asked if the PCU knew of Julia's decline and he said no. I asked him to just spread the word to all her old nurses. It wasn't even 15 minutes later the stream of nurses started <3 It was super awesome. Like... super depressing, but so nice to see. They came over in groups and fawned over her beautiful eyelashes and new-bird hair. They commented on how she's still nice and plump. They said they all miss her sass and her no-finger, and that the room isn't the same without Julia and all her Peppa stuff. They are really happy they know, so they can come over "and visit" (everyone is very careful about not "saying goodbye", which is appreciated). And as soon as Julia recognized one of the PCU nurses, she closed her good eye and played possum. Which she's been doing more of lately. She played possum so long that she lost the game and just fell asleep. And while she's doing a ton of sleeping, we've still gotten some O faces and "mama" and "dada" mouths. Since she can no longer control her iPad, I've changed the channel a few times to some other shows she used to like: Paw Patrol, Bubble Guppies, Abby Hatcher, etc.... and that goes over well for a few minutes then she's back to mouthing "Peppa Peppa Peppa". Right now she's napping comfortably. ~~~~
Pic tonight of how Julia has spent her four December 20th's. Two were pretty good... two have been not so good. And I took a video today just showing her current state - puffy hands / puffy face. I'll get it in the comments if internet cooperates.
YouTube: https://youtu.be/iSm5mCW6X5E . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
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