October 9, 2019
Posting early just because I'm headed down to the hospital really late. Everything's fine, just wanted to post before 10 =) A fine day for Julia =) In an effort to get her on a more normal schedule, they've switch to morning baths. Baths seem to wake her up, so they'd like to get that done and out of the way, so she's nice and awake for her therapy. It went pretty well today =) She was awake and interactive for morning therapy, so hopefully that's consistent going forward. She had two great therapy sessions! Speech (with a different therapist that took some warming up to) had a tea party and pretend meal, and she noted that Julia expressed likes and dislikes very well. Then she was in her fancy chair for 1.5 hours and had a really good time. OT worked with her there, and did the pillar-ring-stacking-game. Julia showed off her smarts and fine motor skills by stacking them correctly three times! ... then she demanded her iPad. LOL. And when the nurse asked if she could move Julia back to bed for her medicine, she shook her head no <3 The pulmonary team has started to get more involved with her case, now that she may be discharged with the vent. Orders today were to attempt to remove her breathing rate again. They tried that several weeks ago and she did OK, but she hit several periods with very few breaths-per-minute when she was in a deep sleep. So they put her back on a lower rate just as a safety net. At rounds this morning, they decided to turn off her rate while she was in a deep sleep "to see what happens", and apparently she did great! So they will continue that going forward unless there is an issue. As a reminder, the "rate" is essentially "guaranteed breaths". It's set at a number, like 10, and the machine guarantees you will take at least 10 breaths per minute. You can breathe more than 10 and nothing will happen, but if you drop below that threshold, the vent will breathe for you. Julia's doing really well, and the goal is to get her off this safety net completely. Once that happens, she will officially be "off the vent". This is a necessary step toward eventually getting the trach removed =) Also, they've also requested she be tested again for the speaking valve! YAY! They would like her to be 2 days without vomiting before they try. She barfed again today, but her 2-weeks of anti-fungal / antibiotics end tomorrow, so we're hoping that was really contributing to the vomiting, and that it will finally clear up. So hopefully by next week they can test her. And a quick explanation of the speaking valve: Right now, air enters and exits through Julia's trach, meaning no air gets further up her trachea, over her vocal cords, and out her mouth - that's why she can't talk. (If she's really excited or angry she can force air up and make some noise, but it takes effort.) A speaking valve is a cap on the end of the trach, similar to the HME, that allows air to enter through the trach, but then it closes, forcing the air to exit through the mouth. This makes the air pass over the vocal cords and allows for vocalization. In order to be a candidate for this speaking valve, there needs to be enough space around the trach for air to get by (between the trach and the walls of the trachea). In June when she was last checked, there was not enough space. But they believe there might be enough now, so they'd like to test her again. With a speaking valve, she should be able to learn to talk pretty quickly =) ~~~~ Video in comments: Another clip from Julia's PT yesterday. I had so many to share they didn't all make it. This one shows that she's stabilizing really well, with just a little help on her leg! <3 And a bonus one of Gabriel being a doofus.
YouTube: https://youtu.be/qMja47Px6eo . . .
********** ~~ 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