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February 21, 2020

Early update (everything's fine... Reed just wants dinner... which pretty much never happens).  An OK day for vitals.  Heart rate comfortably in the 130s, BP currently 90s/50s, but has been 70s/40s most of the day.  

The abdominal drain is draining less - about 1/2 or 1/3 less than they'd like.  An ultrasound is being done to see what's going on in there.  Here stomach is big (clearly), so they're hoping to find out why it's big.  Is there fluid in there?  Is it accessible to the catheter?  If it is, why isn't it draining?  Is the catheter clogged?  If it's not fluid, what is it?  Enlarged organs?  Tumor?  If there is fluid, and the drain is placed correctly, they can do the de-clogger again to hopefully get it moving.  So that ultrasound should happen sometime tonight.

The tube in her left pleural space will be removed today, as it is no longer draining anything, and imaging shows there is no fluid in that space anymore.  The drain was also starting to inch its way out on its own, which can cause a lot of issues once the drain holes (little holes along the final inch or so of the drain inside her body) start to exit.  They can't just push the drain back in, because the outside has all kinds of bacteria on it.  And if one of the drain holes gets to the outside, it can start introducing air around her lung which would be bad.  So they safest option is to just remove the tube.  That will be done bedside sometime this evening by the attending doctor.


Reed is CONVINCED he got a smile this morning.  He's been skeptical of her faces recently, and if they are indeed smiles, or some sort of grimace.  But he said no question it was a smile.  For a split second he said he saw the old happy pudgy Julia face <3 <3 

And I was messing with her big dog stuffed animal.  I put it on my head and said "Julia! Where's puppy??"  And that little eyeball went straight to the top of my head.  I've not done that in quite some time, so that's perhaps some evidence she can still see, at least somewhat.  I got my phone out to try to record it, but then she fell asleep.  It was hard work looking up <3 


Unrelated to Julia, there was a code blue today.  A code blue is an alarm that goes off when a patient somewhere in the hospital is in immediate danger.  It repeats "code blue" with their unit and room number.  Heart attack, stroke systems, stops breathing, something to do with a vital triangle or something... I forget the term (but whatever that term is, is what caused Julia's code blue the first day we were at CHOP -- I'm sure someone in the comments knows.) 

I wasn't doing anything at the time, so I just watched all the people run past my window, sort of in a daze.  Code blues used to make me freak out.  Full blown panic with rationality out the window.  My body would react like Julia was in danger, even if she was sitting in front of me happily playing.  But, I guess I've gotten over that.  Or maybe used to it.  Now I don't get anxiety, but I get sort of a mental slow down.

I admired the doctors in their suits, and others in their scrubs, with the respiratory therapists, and nurses, all running (seriously at full sprint) down the hall.  With my ridiculous medical anxiety, I think it's so awesome that there are people who are built for this world.  

And I have to wonder what the nurses who stay in the room think.  If they are in the middle of care, or have a critical patient, they don't go to assist with a code.  But I have to wonder if they know the room number, and if they've had that patient before, or know the nurse who has them now.  Like, everyone knows Julia's room number.   PICU nurses knew her PCU room number, and her old PCU nurses know her current PICU room number.  If there were a code blue here, would all her nurses think "that's Julia's room"?  And yet they're still able to care for critically ill patients, knowing another child they care about might be in serious danger, and they don't miss a bit, or really even let it show on their face.  Because they can't.  And that's super awesome.  


And then, to contrast me with someone who was built for this... a few hours later I was on the phone giving a Julia update when a second code went off.  My mind just went completely blank.  I forgot what I was saying, and who I was talking to.  I wasn't panicked or anything, it was just a total mental shut down.  I knew I was on the phone, and tried to force myself to figure out what I had been saying, but nope.  No response from the brain.  A weird combo between total confusion and my brain just giving up and walking out.  I had to wait for the code to stop, and then be reminded what I was saying, and then it took a minute or two for things to sort themselves out.  

And I know a good portion of that is PTSD, but even before the PTSD, I handled emergency medical situations very poorly.  

Thank God there are people who sign up for this.


Picture: Gabriel was VERY unhappy to see Cousin Kinley playing with "Gabriel's balloons" (balloons for Uncle Jonathan's bday yesterday).  He kept yelling "Get off Gabriel's Balloons!!!" And then eventually  he walked into the room and yelled "PLEASE LET GO OF GABRIEL'S BALLOONS!" and then snatched them and walked away.  He eventually went back and shared though... he just had to do it on his own time <3 

No video tonight - she's just been sleeping.  




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

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


Julia's official pages: 


Facebook: Julia's Fight Against Rare Cancer - Fund


Julia's official fundraisers: 

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Car Magnet:

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

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