August 28, 2019
Day 2 of chemo, and she's doing pretty well. Secretions are still crazy. She's thrown up a few times, as expected on chemo. The ENT doctor came by and cleared out her ears. I wasn't there for that, but I can only assume it was a wonderful experience for everyone involved. She's not on the ear drops anymore and they say her ears are all clear =) So hopefully she starts hearing better!
Last night they tried letting her sleep without the breathing rate from the vent. She made it all night without it, and did alright. She was apneic when in a deep sleep - about 8 breaths per minute. But she came right back up and her oxygen saturation never dropped. The team is aware, and they don't seem concerned, though they will monitor. They plan to keep her off her rate again tonight and see how she does. All in the right direction to eventually wean her off the vent completely =)
And she's still on her HME today, since around noon. It's going OK - the secretions are the biggest quality of life issue, but she's powering through it.
The night before last she did not sleep... pretty much all night. But last night the nurse insisted on a bedtime, and turned off the TV and lights. Julia protested, but ended up sleeping really well. She got up at 11:00 today and has been all smiles. So they are going to do their best to keep with a bedtime, rather than let the 2 year old decide her schedule. Hopefully this will help with all her daily therapies too.
While we consider our options for discharge in late October, we've started the process of contacting the facilities to tour. I'm most interested in possibly transferring to Dupont in Wilmington. Their acute rehab rooms are private, and they accept trach/vent patients. To get in, she'll need to be eligible for intense therapy, our insurance would have to OK an out-of-state transfer, and she'll need to have a solid therapy schedule and discharge plan. An intense rehab stay would only be 1-3 months, depending on how much she has to gain.
A lot depends on how she does over these next two chemo cycles though, so hopefully she handles everything as well as possible and continues to progress with her respiratory issues.
No new video , but short clip in the comments from a year ago. It's the video I show all the nurses when I introduce them to the happy, smiley, giggly little girl Julia used to be <3 It's one of my favorites. Who knew that would be the last cushion fort I'd make for a long time...
. ********** ~~ Julia Adams ~~ *********** ************* Official Links ************* *************************************
Julia's official pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
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
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