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July 7, 2019

Updated: Jul 9, 2019

Oh man, did Julia have a day.

And by extension, I had a day.  And now it's 9:30 and I want to bake a bunch of chocolate chip cookies for my brother's birthday tomorrow (I've brought like, a bucket of homemade cookies to his office every year for his birthday and I don't want to miss this one!), but I'm having a hard time keeping my eyes open. Any sort of adrenaline just wipes me out now. 

The most motivating factor is I get to eat a ton of chocolate chip cookies... so I'm sure I will make it happen.


So Julia was having a great day!  She was awake and super playful.  Lots of smiles, lots of snot.  Aunt Charlene and cousins came to play with her for the first time in a while and she was super happy!  Lots of hugs in bed.  We wanted her to be more interactive so I sat the bed more upright, not noticing that I pinched off her vent tubing.  Not a huge deal (it's not like it was fully pinched) and she technically doesn't usually need it anyway.  But then she got so excited for a hug from Kinley that she lurched to the side to reach her... and then things went south fast.

We had no idea what happened, but her eyes got real big, she started trying to suck in air but couldn't make any noise, and then all the color drained from her face in like, 2 seconds.  She was grey.  I called Reed over and he tried to adjust the trach collar as it was clearly offset.  As I usually do when things start beeping, I asked if she's OK.  He always says yes.  This time he said no.

So I ran out into the hall and yelled for a nurse.  There were none in sight, but apparently in addition to being literal lifesavers, they can also materialize out of thin air.  People swarmed in from all directions - nurses, doctors, respiratory therapists.  And then I did what I do best which was run away.  I got far enough away that I could still see her door and was able to pretend I was just 'staying out of the way', rather than hiding.   I saw Charlene usher her two kids out of the room, who were now understandably upset.  And I just stood there, several doors away, unsure if I wanted to puke or fall asleep.  Seriously.  I think I've gotten used to this state of heightened anxiety that anything extra is just more than my body has to give.

So it was several tense minutes where I just waited for the code blue siren to start going off, and then I saw people start to calmly leave her room.  My favorite respiratory therapist was just standing in the doorway... and I assumed he'd be involved if she were still in distress.

So apparently (obviously), her trach came out of her stoma.  This is the first time it's happened.  It likely only came out most of the way which blocked the hole completely.  But with all the gauze and strings and fat cheeks, not to mention all the tubing, it's not really obvious what's going on there.  The hole (stoma) isn't visible, so it's not super evident what's happening.  Reed tried to adjust it back in and it didn't help, so that was Julia being completely unable to breathe.  

Once I composed myself, I went back into her room.  Reed said I was out there a while and he was surprised I didn't just go home.  I said it crossed my mind.  (Have I mentioned I absolutely suck with medical stuff?)  I have absolutely nothing to add, other than a dump truck full of anxiety, and that helps exactly no one.

So what I remember is she turned grey, her eyes bulged, I re-connected the trach tubing, and then Reed said she was in trouble, so I yelled for people who know what they're doing, and then essentially ran away.  I asked Reed what he saw.  He said it was clear to him that the trach was likely out or blocked, and he was hoping he could slide it back in.  As soon as that didn't work, he looked at her oxygen saturation to see what was going on.  They like it 95%-100%.  It was dropping rapidly.  He said it got to the 40s before the nurse came in.  I feel like it was like, 5 minutes later, he said it was 20 seconds.  He said the nurse just instantly undid the strings to the trach and popped it back in.  Just with the trach back in, and nothing else attached, she recovered immediately.  They gave her oxygen just because, but she was fine.  Reed held her down while they redid her strings (obviously she was worked up).

Reed is "very glad" for the experience.  He says he's glad he saw it, he knows what to look for, and now he knows what to do next time.  He's grateful it happened.  (We haven't had 'trach emergency' training yet).  Meanwhile, I'm thinking "that sucked that sucked that sucked"... but with more colorful language... I try to keep things PG here for Julia's followers.  But I'm NOT glad I saw it.  I handled it horribly.  And I never want to see it again.  I will have nightmares about her face being grey and her gasping for air.   This happened at like, 3pm and I'm still not back to normal.  


Anyway, so Julia fell asleep like, 3 minutes later, right in the middle of attention from Kinley.  She was likely exhausted from the ordeal.  We let her sleep for as long as she needed (about 45 min), and then get hooked her up to her HME and got her into the play room for a coloring session with her cousins.

I think it went really well.  I can't really remember because my brain blocked everything out other than Julia's colorless face.

I believe she started falling asleep while coloring because she was just so tired, so they took her back to her room and hooked her up to the vent.  But she really did have a great day up to that point.  Hopefully we can add a play date with her cousins every week as well.


Anyway.  So, she's fine.  Everyone's fine.  

I'm going to go look into that bucket of cookies.

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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: | Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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

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