December 3, 2019
Julia had a pretty rough night last night. Heart rate around 185 most of the night. Clearly uncomfortable despite pain meds. This morning during her bath, her heart rate was 210. She has never liked being messed with, but recently it is really bothering her. Today they found she has a fever, which could be some of her discomfort. With her weakened immune system, and constant procedures (blood draws, drain, PICC line, etc.) she's pretty much an infection waiting to happen. The fever didn't read high, <100, but she was very hot to the touch and even her face was flush. In my (very non-medical) opinion, the reading didn't match how she felt and looked. So they're running a bunch of labs to check for infection, and they are giving her fluids. Earlier in the day, they brought in a bunch of cooling packs to put around her, and removed her blankets, to get her cooled down. It seems... overkill for a 99.8 temperature, but I assume they're being overly cautious... or perhaps they don't trust the reading. But they've also noticed her heart rate has been higher since they stopped the extra fluids (her expected fluid intake is covered by her formula, and has been fine for 9 months). But she's been putting out fewer wet diapers than they'd like, and with the fluid kind of pooling internally, they are thinking there might be some dehydration at play, despite markers look normal. So in addition to 'emergency fluids', they are upping her fluids in general. X-ray results came back today, and while there is more fluid around her lung, it's not a huge amount - nothing that needs to be handled right now. They do not believe it's contributing to her discomfort, and the slow accumulation seems to confirm their theory that the original pocket of fluid had been building for some time (many weeks rather than days). So that is just being watched, especially until the source of the fever can be found. But she calmed down once the cooling packs and stuff were placed, so the fever might really have been contributing to her recent discomfort. She's been sleeping all day, and was so comfortable, with such good stats, that they skipped a dose of her new pain meds this afternoon because she didn't seem to need them. So that's where we stand... trying to find this source of fever, and figure out how to keep her nice and comfortable. PET scan should happen in the next day or two, and should give us a better idea of why she might be irritable. She's been very tired today (could be due to possible infection, and new introduction of morphine), but when she has woken up, she's asked for hand holds, iPad, and cuddles... so... all as expected =) ~~~~ I don't have a video tonight (she seriously just slept all day), but I am sharing a picture and some info in the comments <3
(Info below photo in this post) . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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
Julia Adams Update:
Julia Adams oil portrait is now complete. Julia is the little two year old girl who has Clival Chordoma, an extremely rare and deadly form of childhood bone/brain cancer.
I would like to present this special gift to the family with a nice frame on it so if anyone would like to help me with the cost for a frame and shipping you can message me or make a donation through PayPal @ Becauseofhim@zoominternet.net
Everyone that donates will have their name put on a card that will be given to the family with this special portrait to show your love and support.
Thank you #prayersforjulia
Jim's daughter was diagnosed with bone cancer 20 years ago, and as part of his ongoing healing, he's been painting these beautiful oil portraits for families going through similar experiences. I understand this is a good size painting and a nice frame and safe shipping can cost quite a bit. If you'd like to contribute, his PayPal is above. I can't wait to hang this amazing portrait above my fireplace <3 <3
Jim's original post (not sure if there are any privacy restrictions in place - might not work): https://www.facebook.com/photo.php?fbid=3054152814618278&set=a.649794208387496&type=3&theater