Not a fantastic day for Julia, though notable improvement once daddy got back. Despite our precautions and staying away, my guess is she caught our cold. Her heart rate has been high all day, 170-185, and nothing really seems to be affecting it; not fluid or Tylenol. She FEELS warm, and I think she looks a bit flushed, but her temperature has not been super high, though it's inconsistent. They are trying to get approval from oncology to get a rectal temp. And she's thrown up several times today. She's been absolutely exhausted. She slept most of the night, but all three therapies today noted that she was just extremely tired. She threw up during OT, so they didn't complete the session. Speech and PT completed, but she was sooo tired. She's taken several long naps as well. Her secretions are also thicker, she sounds junky, and they're starting to look a little yellow. So they put her on precautions (meaning gown, mask, gloves) until tests come back. They're sending nose and trach secretions for viral and bacterial testing. These can find several kinds of colds, things like the flu, tracheitis, etc. But those tests take 1-4 days to come back. They've tried a few breathing / secretion treatments to help loosen things up. If they are too thick, the risk is she coughs something up and clogs her trach. Obviously not good. There are no pneumonia concerns yet (needing oxygen, trouble breathing, fever, etc.) but an x-ray will happen if any pop up. Since her central line (chest port) is out, things are a bit less intense if she spikes a fever. She won't immediately start on all the antibiotics. But of course they would keep her comfortable and monitor. . She also had a pretty big fluid filled blister under her trach, which I guess popped today and now it looks like a pressure injury. There are limited options to treat that (other than keeping it clean, dry, and covered) because they can't not put the strings on. So that's likely uncomfortable on top of everything else. AND SHE'S SO ITCHY. She is scratching her head CONSTANTLY. They keep trying different creams with limited success. My guess is it's her hair starting to poke back through? I know lots of people read this who have been through chemo - is that a thing? Did it itch when your hair came back or am I making that up? She has also learned to make herself throw up. It seems that as soon as she feels nauseous, she sticks her finger down her throat and barfs, so that's fun. ~~~~ They're giving her some more extra fluid now - water and electrolytes, and Tylenol. And they're just going to watch her while these tests come back. She doesn't look bad or anything. Just very grouchy. If she does have what we had, she will be congested, sore throat, minor fever, headache, exhaustion. We both pass hospital guidelines to be here now... but I still feel guilty. Reed seems fully better, but I'm still wearing a mask just in case. I just hate thinking her fragile immune system is fighting something =( I just hope it's a super easy cold and nothing crazy. ~~~~ I have several videos, but I don't have my editing program here, and I don't have the patience to use hospital-slow internet to do it online. It's EXTRA slow. I think there is a debate on now and everyone is probably streaming. So I'll put a short clip in the comments.
(And Julia just got a FaceTime from baby brother that made her VERY happy!! "Jew-yo" is what he calls her now... "Bye bye Jew-yo!", "Talk Jew-yo!", "Hug Jew-yo!" It's adorable <3 I wish I got a video of it but they're on my phone.)
YouTube: https://youtu.be/tkT2CSY4QTE . . .
********** ~~ 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 Children's Book: https://amzn.to/2CTTN2S 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. You can find them all on my Facebook page or Julia's website <3