August 1, 2019
Vitals are good today. She's had a ridiculous amount of mucus, but no vomiting which is a nice break. She had one short nap and has just been sooooo tired this evening. She's a bit extra fussy and she's crying a lot, like, real baby tears, which I hate =( As best they can tell, she's not in pain... but they have given her Tylenol once or twice just in case.
During her PT session they got her sitting on the edge of the bed. She hated it. And she leaned forward and an entire mouthful of snot flowed out. That had to have been miserable. They suction her ALL DAY. Orally and trach. And she's on secretion medicine. Apparently "why Julia has so much snot" is a hot topic here at the hospital. But, despite the snot, this is the first time she's been sitting up in WEEKS. The most recent chemo cycle really knocked her out. I'm so happy to see her out of bed, even though she was very unhappy. At the end of the session they got her into her highchair for about 30 minutes. They tried to get her to interact with her iPad while there. Didn't go fantastic. Lots of fussing.
She also hasn't had much success with the HME for the last several weeks (this is those 'breathing sprints' where she's disconnected from the vent and doing all the work on her own - critical to gaining strength / eventually getting off the trach). We're considering typical toddler reward-style encouragement to do something she dislikes. The HME is loud, causes more secretions, and requires her to work harder. She doesn't like that, so she gets herself all worked up. I suggested the idea of only giving her her iPad while she's on the HME (she could still have it for HOURS a day this way). But, we're not sure if she's not tolerating it because she's a fussy toddler and she doesn't like it; or because she's weak from fighting cancer and going through chemo.
We're trying to find a balance between encouraging her strength and recovery, and not exhausting her body and inhibiting her cancer battle. Today she tried a new HME machine. She tolerated it much better. She was on it for about 3 hours, and even slept for a bit. Halfway through her nap her vitals did start to dip, so they put her back on the vent.
So even though PT and the HME didn't go great (according to fussy baby), I'm really happy there was SOME progress in both areas today.
I had my first therapy session this morning. It didn't even take the full introduction to diagnose PTSD. We discussed the facts of everything that has happened, what that's likely done to my brain, and what my immediate goals are (not to freak out at the hospital). More specifically, not to panic to the point of "unable to think" when I need to handle her trach.
We did get to see my... whatever it is... in action. He was describing what goes on in the brain during a period of high stress / fight or flight. I was interested and engaged. Talking about my feelings doesn't make me anxious or uncomfortable, so I was pretty calm. He was describing some sort of bodily system, and then mentioned the cortex (fine), and the amygdala (fine), but as soon as he said "brain stem" my mind stopped working.
My heart started racing and I could no longer understand anything he was saying. I could see him talking, I could describe what he was doing with his hands, but his words weren't making sense. I couldn't keep up in real-time, so I was playing catch-up trying to repeat to myself what he had just said, while still trying to comprehend what he was currently saying. The rest of the hour is clear in my memory, but there is a blank spot for about 3 minutes. And we were't even talking about cancer! Apparently an out-of-context related word (the location of her tumor) is enough to send my brain into "Nope" mode.
But, it sounds like we're on the same page. We clicked. I don't get the impression that he will be looking at me all sympathetic-like (I don't need that), or telling me how sorry he is (I know), or describing a 'calming beach scene' (please don't). He gave a few skills to start practicing, with the immediate goal of remaining the hospital room when things get tense. Or like, when her food machine beeps saying it's empty. Both of which mean "Julia's dying" in my mind, apparently. So I'll see him every week and hopefully we can make some progress.
So thanks to everyone who said I have PTSD. I dismissed it for several months. But apparently I do, and apparently it can be worked on. So... good job!
Julia is done her bath and trach change, and she's now sleeping peacefully back on her full vent settings (Reed calls it 'auto-pilot', and it often puts her right to sleep because she's so relaxed). Picture and video today of a new food basket sent by a Facebook friend <3
YouTube: https://youtu.be/mTbCBLsGh2k .
. ********** ~~ Julia Adams ~~ *********** ************ Official Links ************** **************************************
Julia's official pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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