December 23, 2019
Julia's had an OK day today, but she had a rough night last night. When I got to the hospital, she just wasn't in good shape. Her heart rate was 180s/190s, respiratory rate 50s/60s, ET 40s, BP 110/60s, oxygen saturation low 90s with increased pressure support and oxygen at 45% (up from room air of 21% or her normal 'extra' support of 25%). She was getting randomly higher temps (low 100s) and then they'd go back down. Reed said earlier in the day she was super sweaty, but no fever. She didn't appear to be in pain, and pain meds didn't budge her stats. Like when I got there, she did her typical O face of excitement, then immediately asked for daddy a million times. That's not how she acts when she's hurt. But her body was working REALLY hard for something. An x-ray of her chest, to check the pleural effusion, showed 'something' on her other lung, but as of now, they're not sure what it is. It's slightly cloudy. Could be cancer, could be infection, could just be lots of mucus that she can't clear. They did urine, respiratory, and blood culures. Most are still working, but some bacteria came back in her urine, so the thought is another, or the same, UTI. The more concerning news is her white cell count is pretty much at 0. It was over 10,000 a few days ago, two days ago it was 2500, today it was under 400. So she pretty much has no immune system to fight off this UTI and whatever might be in her lung. They also found her hemoglobin low, so she got a transfusion for that, and her body seemed to respond favorably. They made the call to hold off on both chemos, length TBD, to give her body a chance to recover. They are keeping the Mebendazole going as that doesn't affect blood counts. So, they're hoping the low cell counts and this bacterial infection is what had her vitals all out of whack last night. Today they have settled out a little, but not perfect. She's been started on four broad spectrum antibiotics as they nail down exactly what infection she's fighting. And droplet precautions have started, so everyone enters her room in mask, gloves, gown. Reed was going to come home today just to see Gabriel for a little bit... but we had to call that off. He can't risk bringing something to Julia, especially with this major cold going around. I'm surprised he's avoided it as long as he has, living in the hospital. But, hopefully they're on the way to figuring out what she's fighting, and can get her back to her baseline in a few days. They know my stance on pain relief is to give it to her even if they're 90% sure she's fine. They're just having to walk the tightrope between Morphine and being able to poop... as she's very sensitive to these sorts of meds. So, with Morphine comes 5 different laxatives. Even though, she's had some toe and hand wiggles, and several O faces and dada/iPad requests. And of course, lots of Peppa Christmas Specials. (Gabriel watched a Christmas special of Baby Shark today, and then made up his own rendition of "Jew-yo shark do-do-do-do). <3 <3 ~~~~ Aunt Charlene and family came over to help get ready for Christmas Eve dinner tomorrow. Kinley did an awesome job setting the table, Jonathan fixed all kinds of things I've just been ignoring, like my wobbly table, and Charlene cleaned parts of my refrigerator I didn't even know you were suppose to clean. (And Joshua played all my video games.) So the house looks fantastic, and is all set for our dinner tomorrow, and I got to spend several hours with Gabriel and it was so nice. Speaking of which, I'm quickly learning that I have no idea what it's like to have a toddler. Julia (we now know) started getting sick shortly after gaining her independence, so she was such a mild-manner toddler. She just wanted to bounce on her donkey and cuddle. ...Not this guy. He's into EVERYTHING. He managed to spill like, 5 drinks, tried to put several dangerous items into his mouth, and pretty much colored on every surface other than his book. Speaking of which, if anyone knows how to get black sharpie out of couch, swede, coffee table, and laptop... let me know -_- So I'm getting this update out, then heading to the hospital to see my princess, and then probably Wegmans at 4am to get a few more things for dinner tomorrow. I have adopted Julia's night owl schedule since she's just been sleeping all day. . I think I have a video, it will be a minute though.
YouTube: https://youtu.be/4IhoeGtsb_s . . .
********** ~~ 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