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May 3, 2019

Julia had an expected day. Counts are near zero, so she's tired and grumpy. Vitals are all fine. Just one or two of her snot-barfs.

(Warning - upon re-read I realize this became a bit of a bitch post. Sorry.)

She threw up all over her trach, so Reed assisted with changing everything out. Changing the strings on the trach (the velcro around her neck that keeps it in place) requires two people: one just holds the trach in place, and the other undoes the velcro, wipes down the neck, and fastens everything back up. It's way more difficult than it sounds - she has so much chub around her neck you have to dig... and she hates it so she squirms, and fights, and gags. And you can't use a rolled-up blanket under her shoulders to tilt her head back for easy access due to her fusion surgery. And she can't be sat up without all kinds of support (not ideal when messing with an airway).

But Reed's now done both parts - holding the trach, and changing the strings while someone else holds the trach. It doesn't bother him. He's the most steady person I know. Nothing grosses him out. He's doesn't doubt his ability. His head stays cool and calm under pressure... completely the opposite of how I operate. I'm not doing well with the trach at all. I'm trying to just "get over" my squeamishness, but that's proving difficult. I can't even attempt to take a tick off someone, or put earrings in someone, without getting sweaty and dizzy. I found my cat being chemically burned by a flea/tick medication I put on her neck, and I was like a deer in headlines, just freaking out at her bubbling skin. Seriously. I did exactly nothing to fix the situation; I just panicked. Luckily Reed was there to handle everything perfectly. Who knows what would have happened if it were up to me. That's how I operate under this sort of medical pressure. How the hell am I going to keep a trach/vent two year old alive on my own? I won't always have someone else there... I have to be trained because there are times when it will just be me.

I realize that "once I learn it I will be a stronger person", but I'm tired of becoming a stronger person. I was very content with my not-strong self a year ago... with no dead people in my life, no terminal illnesses, no gross wounds and surgeries, no dead cats, no split up family, no being surrounded by the word 'cancer' everywhere I turn... I don't want to learn to care for this trach. And I know that makes me a shit person because I should be nothing but grateful she's alive enough to HAVE a trach. But clearly the 'super-mom' in me is not coming out in this area. I'm tired of overcoming personal hurdles. I want to watch Survivor, and not have anything in the house for dinner, and complain about having to change another diaper. I want BOTH of my kids under my roof. I want my old life back.


I feel like I should just delete that all, but I won't. Not every day is a good day.

She had a visit from PT today, and she wasn't super happy. She's been getting pretty OK with playing, but she definitely doesn't like being touched or manipulated in any way. They don't think she's in pain (as her vitals don't suggest that), but they're sure she's tired, uncomfortable, and likely scared. They also said she's probably scared OF pain. Who knows how long she was in pain before the surgery in November... she was too young to tell us. And then they cut into her body a dozen different times. And then she recovered from painful spine surgery that permanently affected body movement. And surgery at the back of the mouth which made even swallowing and breathing hurt... So they said she likely is afraid OF pain, rather than IN pain. Isn't that an awful thing to read? A two year old has experienced so much physical pain that she's afraid of it.

So Reed got a short video of the therapist working on her left shoulder. This is the side that suffered from the stroke damage. For many weeks after the stroke she had some restrictions on the left shoulder. They've all been lifted; now they just want to continue working on range of motion and strength. So she hates it... but I guess there's no choice if she wants to use it again some day.

And I've been icing my knee all day because I guess I twisted something while on a walk yesterday. And Reed and I had to cancel our like, 2nd date night all year because I have the mildest sore throat in the world, which is now a gigantic deal because we killed off all Julia's white blood cells...

I really did have an OK day... frustration just came out while typing.

I'm just annoyed at my inability to get over this trach situation. I don't want to be the holdup when they're ready to come home.

(And I just watched the video Reed sent... he says she's grumpy like her mommy. I guess that's accurate!)


. . . ********************************* ********** 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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