July 8, 2019

I'm still on edge.  Which makes me laugh a little, because it's so ridiculous.  This episode was over 24 hours ago and everything is fine! I feel like I've been chugging those 5-hour energy shots from the convenience store.  It's like my body is prepped and waiting for an emergency... Not sure how to come down from this other that time.  Clearly sleeping didn't help!

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Julia has had a good day today =) Her counts are low from chemo, she's gotten a bit of blood, but she's really doing great.  She hasn't puked in two days, and her vitals are all super stable.  

She didn't manage any time with her HME again... so that's disappointing.  She was doing really well, but the latest round of chemo wiped her out and she hasn't quite worked back up to it.  Though she has been on just CPAP (pressure support - a stream of air to help keep lungs inflated).  It's just a touch over what a typical person has naturally, so limited support.  They're very happy with that.  (This is opposed to being on additional support from her vent, such as guaranteed breaths / more pressure / additional oxygen.) They think part of the HME issue is that she hates how it sounds.  It's very loud and it's right by her face.  All her noises are amplified - coughs, gurgles, breaths.  She gets agitated the second it's hooked up, even if her vitals don't indicate she's struggling to breathe.  So they're trying a different machine tomorrow.  She will still be fully breathing on her own, but just loses the benefit of being "portable" since she'll still be attached with a tube.  Being tube-free for a few hours a day is certainly convenient, but in the end, we want her strength recovered so this trach can come out; so if she just needs the humidifier further away (so it's not so loud in her face) then whatever. 

OT did stop by today and they had a short session.  Julia participated a little, but she just kept requesting her iPad (That's my girl!)  She wanted to watch the first 3 seconds of a hundred different Peppa episodes.  So, it was just a short session, and then they relented and let her have her soaps.  I guess she can relax today.  ...I need to relax and I wasn't even the one unable to breathe.  

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Answering a few random questions/comments from yesterday's episode:  

--- Julia couldn't breathe because the trach was only partly out so it blocked both the stoma (trach hole) and the airway to her mouth.  If it were out completely, she should be able to take some breaths through the stoma since hers is nice and open, but she couldn't sustain that and it would be a struggle.  And if the stoma were covered completely, like with gauze and tape, she should be able to breathe through her mouth (though we haven't seen that yet) as there's nothing physically blocking that airway when the trach is not in.

--- About the alarms: all her vitals are monitored (heart rate, respiratory rate, and oxygen saturation).  These stats and notifications go to the in-room monitors, monitors in the hall, the nurses phones, and the light above Julia's door.  From what I've gathered, there are thresholds set for each alarm - the nurses know when everything is normal, vs. when they should probably pop in (to see why her heart rate is sitting higher), vs. "OMG GET IN THERE".  So, had I not run into the hall screaming, the nurse would have been notified at any moment that Julia's oxygen saturation plummeted; and being on the trach/vent floor, they likely would have known immediately that she decannulated (that's the fancy way of saying her trach fell out).

--- At home we will not have these fancy monitors.  We will have a graphical monitor for her oxygen saturation... but it won't be paging our phones or anything.  A qualified caregiver needs to be awake and within arms reach at all times.  That's why she needs round-the-clock nursing. 

--- I hesitate to say Reed doesn't have emotions, because he clearly does.  But he's very... muted.  If an average person ranges from 1-10, he might range from 4-6.  I asked if he was scared or concerned and he said no.  He understood it was an emergency, but was confident the right people were on their way to handle it.  Seeing her in distress, empathizing with her fear, worrying about her dying, and brain damage, and lasting emotional trauma... are all thoughts that simply don't cross his mind.  Everything is very logical to him.  Problem: she can't breathe.  Solution: get her to breathe.  All the other 'noise' that a typical person might have to struggle through doesn't exist  Awesome for a life-or-death situation... less awesome for like... emotional support.  (Lol @ emotional support from Reed).  But that's OK - we all have our strengths.

--- Julia's left hand (stroke side) was pretty curled up in the video.  It's not always like that.  Maybe it's because Reed tried to put a crayon in it?  But she usually has it pretty extended on the bed, and she's stretching it around much more now.  She used to wear a brace on it, but that seemed to stop when she got more active... I'll ask PT if it's definitely not needed anymore.

--- Kinley (cousin in video) is so good with Julia, she's nurturing and loving like her mom.  Even at the very worst of times (literally on her death bed), Kinley laid beside Julia, brushed her hair, painted her nails, and just talked to her like she was a normal, healthy girl.  Joshua's expertise lies... in running all over the place and having fun (with Julia).  He can't really do that with her right now, so his skills are limited, but he still likes to be included.  Whenever Julia IS ready to go, Joshua will be her guy.

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Pix: happy baby on the left, and can't-stay-awake-to-play baby on the right.  Video is a few short clips that really show how playful she's gotten!! In comments =) 

Edit: Happy birthday to my brother Nick! He didn't get his chocolate chip cookies today, but they're in the oven now... so, tomorrow!

YouTube: https://youtu.be/XjjV3NEokHY .

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. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* *************************************

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

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