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May 28, 2019

A few things beyond her typical update tonight.  

First, Julia...

Grumpy day today, but really tired.  Speech therapy did stop by, but she had JUST fallen asleep, so Reed asked them to come back tomorrow.  PT is also scheduled for tomorrow.  They continue to wean her nerve pain medication.  She's currently doing her 2nd breathing sprint of the day and it's going very well, though lots of secretions (medicine still having no effect in its 2nd day).

She has been enjoying grabbing the suction tool and holding it up to her animal's noses... cutest thing ever.  A 2 year old will find stuff to play with!  She's also getting quite an arm on her, and can chuck her Foxy clear across the room (and can aim at Reed when he's on his computer and not paying attention - he said it landed right on his keyboard!)

They're really pushing trach training... I'm sure it's because I'm doing so poorly.  They want me to add an extra day, and they've also mentioned adding an additional caregiver.  Reed's brother seems to be interested in learning... just to have another qualified pair of hands around.  So we're going to explore that a bit more this week.

And in other fun news - we had another tornado warning, but this time apparently several funnels formed and even touched down just a few miles from my home.  The wind was loud and the house was shaking... and now that I think back, there was a huge bang next door... I should probably text my neighbors.  But water was POURING into my basement/garage window, and I found one little nook to hide in literally surrounded by set rat traps and rat poop... (the pest control people are working on it).  So I had my pillow and flashlight and sat in my 3x3 rat-poop-protection hole.  Fun night.  



. *** Other stuff ***

The "All In to Win Foundation" created a T-shirt to raise money for childhood cancer research.  They requested the names of child fighters, survivors, and angels to put on the back of the shirt.  Our Julia is 4th row over, 3rd down <3 .  It's $20 and all proceeds go directly to the foundation.  Through the connections I've developed here, I've now 'met' three families whose children have passed to cancer in the last MONTH.  It's hard to find a better use for money than supporting this research. 



Another amazing foundation, Fourth and Gold, chose Julia to be their "Warrior of the week"!  They have a short write-up and some pictures <3 Give it a look, and consider following their Facebook page if you'd like to hear about other brave fighters.



*** FAQ from video yesterday ***

About the trach change video I shared: First of all, I loved the two-toned responses.  50% of were, "OMG I can't watch", and the other 50% were ,"But look at her left arm go!"  It was awesome.  In fact, real good point that despite it behind hard to watch... it really IS great exercise for her!

There were lots of questions, and I answered most of them, but I know it's hard to go through so many responses. So here are some FAQ that came about:

-- The trach is still expected to be temporary, but will be in for several more months at least (possibly quite a bit longer - more below).  

-- They won't let her leave until 2 caregivers have been fully trained and prove their ability in all areas (so both Reed and I will need to show we can do all the things: suction, take vitals, remove trach, insert trach, change strings, respond to emergencies, etc.)

-- There is a doll to practice on... but it's.. not the same.  I have no issue putting a trach in and out of a doll.  A very angry 2 year old with 3 chins (and a life to lose) is quite a different story.

-- She is not in pain, but she is definitely uncomfortable with all the gagging.  And we can't tell her to relax and stop fighting, which makes it worse.  The second the procedure is done, she is happy and calms right down (usually asking for covers and daddy); but smiling and waving goodbye to the nurses.

-- She can breathe the whole time, despite what it looks like.  The trach is only actually out for about 2 seconds (for the swap), so that's the only time she's not breathing through it. Everything else is prep work. 

-- This is a scheduled, 2-person job.  A 3rd person to wrangle is ideal!  But I understand experts have learned to do it by themselves with no issue, though it's not recommended.  The good news is, we can likely schedule the trach changes for when Reed and a home nurse is present, so I would just be the backup.  

-- Julia could breathe without a trach inserted for a short period of time (up to a few minutes)., but she would struggle   We're told some kids struggle with it out for just one second.

-- Her face being colorful and pink is ideal.  If it were to turn grey / blue, that would be a concern.  One person is always watching vitals, and you can hear them comment on her oxygen saturation dropping at one point (turns out she kicked off the monitor).  At the end they also comment that vitals were stable and they checked her respiration in both lungs with the stethoscope.

-- It is possible to not successfully get the trach in.  We're only supposed to try twice.  If it doesn't go in, we grab the emergency trach which is one size smaller and a little more ridgid for easy insertion.  We try twice with that.  If that doesn't go in, we "bag her" (manually pump air with a bag) and call for help.

-- Changing her trach/strings is more difficult than it should be because of her neck fusion.  Most people have a blanket roll put under their shoulders to allow their head to fall back / open up the neck for easy access.  We can't do that with Julia, so the position is difficult.  Not to mention she's all cheeks and no neck... 

-- This trach change is done weekly (unless gunk get in it), and her strings are changed daily (unless gunk gets on them).

-- Why they are delaying taking it out.  Most trach/vent patients need to prove they can live fully without the vent before it can be removed (sounds obvious).  We're not even there yet, though she's making huge progress!  But Julia, being a chemo patient, needs to go beyond that.  The concern is infection.  What they know right now, is that Julia has proven several times in recent history that she has needed the vent to support her breathing - due to surgery / cancer / weakness.  She has needed everything from minimal support all the way up to full breathing-machine assistance.  The current stoma is fully healed, and infection risk is minimal.  If they were to remove the trach completely and let things heal up... should she struggle to breathe again (which they have to consider is a possibility given her history), they would have to intubate her.  That's a tube (foreign object) down her throat.  The infection risk is huge.  Julia got pneumonia TWICE in December from being intubated.  Could she fight off  pneumonia with no white blood cells?  Probably not.  The other option would be to put in another trach - which is SURGERY on a patient who has no white blood cells.  That's why it feels like this removal process is taking forever... they want to guarantee (as much as something can be guaranteed in the medical field) that she will not need the trach again in the near future (years).  No one has SAID anything, but talking to other cancer moms... I have a suspicion that they will not remove the trach anytime soon, but they might "officially" cap it (so she's breathing / eventually talking through the mouth).  At the appropriate time (aka when I can handle more bad news) I will broach this topic with her team.  But for the time being, I understand this IS the safest course... and the biggest problem is only that I hate it.  



. *** Back to Julia <3 ***

Video tonight is another HUGE milestone!  Yesterday she was SO EXCITED to clap her hands! You can see she finally found her left hand to clap it together and she's so proud of herself!  The second time around, she even realized her hand felt off and appears to try to adjust her fingers.  Great progress! <3 <3 (pardon the snot fountain).



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

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

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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