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March 6, 2020

I was reminded that today is the 6th, which means we are officially 14 MONTHS past "days to live".  She's not in great shape right now, but she spent many of those 14 bonus months laughing and playing and smiling, and getting all the daddy cuddles she could want <3 


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Her heart rate was higher today - steady 199.  They noticed when they turned her for her bath, she started having PVCs. (Since people will ask, I'll just Google that now: "Premature ventricular contractions (PVCs) are extra heartbeats that begin in one of your heart's two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a fluttering or a skipped beat in your chest.")


There are many reasons that could happen, and they're not sure why it just started for her.  Other than 'cancer'. Which is probably accurate.  They submitted blood for labs to check on some deficiencies and balances.  Her potassium is low again, so they're supplementing.  The PVCs stopped when she was turned back onto her back.  Her oxygen saturation also suffers when she's on either side, so they're having more and more difficulty repositioning as regularly as they'd like.


Her primary asked today how we felt she was doing, pain wise.  I said I can only see what they see: a higher heart rate and not much responsiveness.  We both agreed we haven't gotten meaningful eye contact in several days (her eye has been open, but not 'finding' us).  She asked how I felt about going up on her Morphine.  I said yes.  At this point, I don't care that she's super out of it, I just want her comfortable.  So it was switched back to IV and the dose was slightly increased.


She also spiked another small fever of 101.8 (38.8), but responded to ice packs and Tylenol.  The Tylenol has brought her fever down and her heart rate is now in the 180s, so, unsure if it was discomfort or fever related. BP is OK at 64/49.


The respiratory therapist also seemed interested in what was coming out of her stoma during string change today (the stoma is the hole in her throat where the trach goes, and the strings are what hold the trach in place).  She said it was not secretions, but more like bilious fluid/mucus, which shouldn't be there.  It's the same color and consistency as what comes out of her nasal tube (and sometimes her mouth if she spits), but it shouldn't be down in her airway.  There is an inflated balloon on the trach that should do a pretty good job at preventing this digestive tract stuff from dripping down the back of the mouth/nose into the lung area.  She didn't seem all that happy to find it there and made some phone calls, but I've not heard anything more about that.  I'm not sure if there is anything to "do" about it anyway.


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Other than keeping her comfortable and giving her lots of kisses, we're been rotating her cartoons.  Today it has been Umizoomi and Blaze and the Monster Machines. I line up her iPad with the crack of her good eye... so if she can still manage to see, they're right there for her.  But I'm sure by now she has them all memorized, so hearing them should be enough of she's not snoozing.  


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Reed is really missing Gabriel recently.  Last night he even brought up maybe having Gabriel over for a sleepover this weekend.  (Reed never suggests anything ever... so it's definitely been on his mind).  But you could visibly see the idea drain away as he thought of Julia.  He can't risk it.  He misses Gabriel so much, and hasn't had a sleepover with him in... I don't even know.  Months.  Maybe a year.  I can't remember.  


Back in October when Julia was at her best and we thought she was on her way to rehab, I took down her pink princess crib Gabriel had been sleeping in (on the weekends when he stayed with me), and bought him a cute little Paw Patrol toddler bed, with a Paw Patrol bedding set and matching end table.  


I got his room all set up, but then Julia's cancer came back.  There were a few emergencies, and she went downhill fast... and my overnight visits with Gabriel stopped.  I've had his big boy room ready since October, and he still hasn't slept in it.


So it's been... almost 5 months for me, and much longer for Reed.


With Julia on the vent, we likely won't get much notice when it's her time.  And he can't risk missing it.  Of course I offered to stay here at the hospital.  I've slept here a few nights recently.  Well.  I'm here.  Over night.  There isn't much sleeping.  But I certainly don't mind propping myself up in a chair so he can spend the night with his little guy.  But he just can't do it.  



He's given so much to Julia, and missed so much with Gabriel.  Gabriel will understand, of course.  This is his sister.  It's just time we'll never get back.  And again I'm stuck between this world of wanting this to be over... and never wanting it to end.  


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I added "Julia's Army" charm to her bracelet.  If you'd like a matching one, the link is here: https://etsy.me/39bKtpg  



No video tonight.


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*********** ~~ Julia Adams ~~ ***********   

************* Official Links *************

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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://bit.ly/35ppbSx

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 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here: juliaadamscancerfund.org/summary





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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!