June 10, 2019
Julia was up ALL NIGHT. Reed finally couldn't stay awake anymore and went to bed around 4, at which time Julia threw a huge toddler fit. Reed slept for a few hours, and she was still awake and grumpy when he got up... so... not super clear if she slept at all. Talking to other chemo patients, I guess insomnia is a common side effect. Some people said they just wouldn't sleep for days at a time. Toddlers are grumpy enough without sleep!
So Reed left in the afternoon so we could go to the chiropractor. While we were gone she finally went to sleep... I think Reed's seeing that him being gone for a few small chunks at a time is probably beneficial to her at this point. So hopefully we can work something out. This girl just needs to sleep!
She didn't barf all day, but when we got back here in the late afternoon it all came up. Over and over again =( At least she gives us a headsup by pointing at her mouth first. I guess that's kind of cute... given the situation. So she threw up over everything and required an early bath. They usually give her an extra dose of Ativan when nausea hits and she responds pretty well (And bonus - it makes her a bit happier... and a bit sleepier).
Her heart rate is a comfortable 190 right now. She just had a really great bath (no sarcasm)... likely because she got an unexpected FaceTime from Aunt Charlene that just made her the happiest little girl ever! So she laughed and smiled and wiggled all during the bath =)
And whew. OK. Late post because we JUST did our first trach change. Not just strings, but the whole thing. I had NO IDEA I was supposed to participate tonight. I hadn't even successfully WATCHED a trach change. We went to the class to learn the steps, but I figured I'd have like... several more days (years) to watch before I had to participate. But Reed and I had to do it from start to finish - setup, prepping, pulling out the trach, putting in the trach, checking to make sure she's breathing, full string change, etc. The nurse held the phone on FaceTime for Jonathan (Reed's brother) and Charlene so they could get a good overview of the process since they will be helping with her when she's home.
My job was pulling out. So I had to hold the trach in place while Reed undid the ties. And then I pulled it out, he inserted the new one, and I switched over the tubes and ran as far out of the room as I could... which was to the closed door. Then they reminded me I had to go like, make sure she was breathing with the stethoscope. I give myself a B+ just for staying in the room.
Reed did great, but he forgot to pull the opturator out after he inserted (it's like, a stiff rod inside the flimsy trach to help it go in... soft things into holes isn't easy, right?) I saw he forgot that when she made the 'why-can't-I-breathe!?' face, so I pulled it out. The nurse said we had EXCELLENT communication. I said it's because we spent 10 years slaying internet dragons as a team. Video games save lives people.
OK. Now I need to go to sleep because that was so incredibly stressful.
Quickly grabbing pictures and a video and uploading!
. ******** ~~ Julia Adams ~~ ******** ********** Official Links *********** (These are here because of scammers) ********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S 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. You can find them all on my Facebook page or Julia's website <3