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March 24, 2019

Julia slept all day, and finally started waking up around 6pm.  Apparently around 4am there was a "controlled emergency" as Reed called it.  He said I would have fainted or ran out of the room.  Apparently Julia was just getting a regular trach string change, but shortly after that was done, she was unable to breathe.  She was visually in distress, all her alarms started going off, she was de-sating (oxygen saturation).  They tried suctioning and putting her on 100% oxygen but neither helped.  So they quickly did a full trach change and things calmed down.  They have no idea what happened.  Their best guess was some sort of mucus snot ball clogged the trach, and just got dislodged when they changed it.  But Reed said seeing her doing that was pretty alarming... with her face all red and veiny...

And I just learned this RIGHT NOW, while I'm here visiting.  Just before, I finally got up the guts to WATCH a string change.  They sat her up to do it (the other nurses had her laying down), and it seemed to go better.  She fussed a little, but she wasn't gasping or gagging and it was pretty OK.  And then I watched the nurse clean her stoma.  I didn't really SEE anything, but I wasn't avoiding it... it just never came in view. Anyway, so I finally thought I could take baby steps to making this happen, and then Reed tells me about this horrible experience earlier in the morning after string changes!  I can only imagine that happening when I'M the one caring for her...  So I guess after that excitement, she and Reed finally got to sleep around 7am and slept most of the day.  Right now she's taking a cat nap, and her vitals are great: heart rate 120s, ET high 30s, BP 109/70.  

She pretty much hates everything Charlene and I picked out for her to touch and feel (mom win).  She very clearly shakes her head NO to everything we offer... and we picked out some cool stuff!  Some squishy worms, and soft spikey things, and slimey things, and fat unicorns... not interested one bit.  She did seem to enjoy an large numbers board we got - just a like, half-poster size board with the numbers 1-12 on it.  She didn't respond great to being asked where the numbers are, but she... half responded I guess.  Before she got sick, she could find 1-10, so I can't tell if she was just really tired, or maybe forgot a bit.  But she did enjoy me holding her elbow up and her pointing to different numbers.  So at least that one seems like a keeper.  (And she very excitedly pointed to "Julia" (her belly), "leg", "knee", and "mommy" - all things she can touch without really moving her right arm =)

Oh, and Reed started seeing her right eye (bad eye) act.... strange.  It appeared to be moving independently of the left.  Like, until now, her right eye would appear to try to move along with her left (it just could move a much smaller distance and would like, pop back to center).  But today Reed believed he saw it moving a completely different direction than the left eye.  So he told the doctor at rounds and they will have the ophthalmologist come back this week and take a look.  But because there was a visual symptom change, they did another head CT to make sure nothing neurological was going on, and everything was totally fine (obviously except the existing problems).  But they found nothing alarming that would suggest the optic nerve being newly squeezed, or a brain bleed, or anything like that.  

And in POSSIBLE GOOD NEWS,  like... fingers crossed she wasn't seeing something... the nurse today said she believes she saw Julia's right pupil react the TINIEST BIT to light!  She can't be sure (but that's usually how all her other improvements started).  But this would be the first pupil response out of that eye since December - it was the first thing to go.  So I'm hoping the weird eyeball movement might just be pressure (from the cancer) on that optic nerve being released even further - allowing the pupil to start to react, and making the eyeball behave oddly as it regains some functionality.  Hopefully more updates in this department over the next week!

In chemo news - two days ago her blood counts were at zero, today they were 8,000.  So they are finally on the way back up (she should start feeling better in a few days!) and they were able to stop the extra medication that assists in early recovery.

We have a consult with nutrition tomorrow to (finally) make the formula switch.  Super annoyed it has taken so long!  And we also asked about the speaking valve for the trach, so Speech Therapy will consult with us this week to see what steps they might be able to take to make that happen =) 

Pic tonight is Julia being a TODDLER!  She's been escaping her hand braces minutes after they're put on now =)  She doesn't like them and wants nothing to do with them!  It's kind of adorable to see her waving her hands around when they're supposed to be in her splints <3 <3

. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************

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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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sophia palladini
sophia palladini
Mar 26, 2019

Its amazing to see her little hand supporting itself life that!!!

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