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January 3, 2020

Updated: Jan 5, 2020

Not a bad day, considering. Her breathing continued to be labored throughout the night. After some new imaging today, they determined a safe spot to insert a drain near her left lung. That procedure went perfectly, she was super comfortable, her vitals didn't even budge. It was done bedside by one of the PICU doctors. He drained 200ml immediately, and it looks like another 80 has collected since. An x-ray just 30 minutes later showed visible improvement. The previous x-ray showed her left lung looking much like her right (really white and cloudy - like in tonight's pic), now there is a visible lung again. So the breathing relief was likely immediate. Since the drain has been in, she's actually had her eye open a bit! I don't feel like her eye was super responsive, just kind of lazily staring, but I put Peppa on and she found it right away. She actually watched Peppa on and off for over an hour =) Vitals have already been better since the drain. They've bumped her vent settings down several times. Heart rate comfortably in 130s/140s, respiratory rate teens/20s, oxygen saturation a solid 99% with 30% oxygen support, ET 30s/40s, BP a touch low all day (lowest 71/44 shortly after procedure, now 81/45). She is currently not initiating any of her own breaths, but her vent rate is set higher than her normal (18 rather than 10), so it's possible she just isn't having the opportunity. (Edit: vitals slightly worse across the board when turned onto her right side, like she is now.) Many people suggested the red around her belly button could be a sign of a yeast infection. I brought that up to the team, and they said that's been a consideration. I guess it can be hard to know 'for sure'. So they apparently tried a cream for several days last week with no improvement. They had dermatology in today; they don't believe it's infectious, and they prescribed hydrocortisone cream to see if that helps. They also ordered some more specific labs to check different enzymes. Several more doctors have reviewed all these images of her swollen belly. There is a little fluid, but not nearly enough to account for the size. There is stuff in her bowels, but not much (she had an award-winning size poop last night! She probably feels way better). What they are able to see is that her kidney, liver, and spleen are all pretty enlarged. Which I guess is not uncommon for oncology patients. There is nothing really to be done about it, and all other tests indicate they are all still working correctly. But they explained as they get swollen, they kind of push down from the rib cage and make all the intestines and other organs move around, leading to this distended stomach. Her right leg is nice and toasty today. So I thought that was great improvement. But now her left leg is ice cold. So... who knows. And apparently her trach plugged this morning. Thankfully I was not here yet. I guess her secretions had gotten pretty thick, and something just clogged, which happens. So they had to bag her manually while they figured out why she lost oxygen saturation. I spoke with the doctor who was there, and he said she stayed comfortable the whole time and didn't appear distressed (unlike when I personally saw her decannulate, which was traumatizing). They obviously get immediate notifications that something is wrong, and a clogged trach is something they deal with regularly, so they were able to quickly get her breaths again. The doctor said he's pretty sure just switching to the bag pulled out the clog (he's like, an 8 foot tall gentle giant, so I'm sure his hand pressure on the bag was all that was needed.) He's also the one who did her chest tube today. He's awesome. So, just resting comfortably all afternoon and watching quite a bit of Peppa =) ~~~~ I wanted to mention a few things about my 'sad face emoji's' comments in New Year's post. While I appreciate the enthusiasm, I want to make sure that it wasn't misinterpreted. If you guys want to react to my posts with a sad face, or put sad / crying faces in the comments, it's fine. It was just a recommendation, not a rule. I briefly mentioned an example at that part of the post, but it was already long (and 11pm) so I didn't elaborate more. Here is the sort of scenario that sparked that comment: Back in September-ish, when Julia was doing her best, some days I would be SO excited while taking her pictures and videos... excited to tell all of you how amazing she had done! There were days where not a single bad thing was said in the post; she was sitting up in her Julia boat, vitals were great, cancer was stable, lots of smiles, she was working so hard with PT. I had tons of pictures and videos of her smiling face to share... And yet, 3 seconds after I post, I start getting notifications with sad faces. That's the sort of thing I was talking about. Like, no one possibly watched the video in 5 seconds. No one read the post yet, which mentioned only happy things and awesome Julia accomplishments. They simply saw a bald-headed cancer toddler in a hospital bed, and they just couldn't help themselves but to slap a sad face on there. In that case, it's not support, it's not love... it almost feels like pity. They don't even care that Julia is happy. THEY are sad, because cancer is sad, and they can't manage to look past her disease and see her spirit. That's why the sad face emoji's can bum me out, and why they don't always feel like the most appropriate response. Those sad-facers are the people I imagine moping into her room, mourning while she's still fighting, unable to compose themselves long enough to be proud of her strength and determination. I imagine Julia looking at their sad face and wondering what she did wrong. And I believe this feeling is shared among the majority of other parents with medically frail kids, which is why I wanted to give my personal insight. Not necessarily for my page now, but maybe for their page later. Things are not great with Julia right now, so if you're sad, and want to react that way, go for it. I personally still prefer hearts, but this is pretty much the furthest from most disappointing thing in my life right now. It's not a big deal. Just keep the reaction suggestion in mind for other families. Well, reaction and interaction in general. Try to focus on the child and not the injustice of their circumstances. ~~~~ Pictures tonight: I took a few pictures of Julia's x-rays from after her procedure. You can see the concern with her lung/s and why she's had trouble breathing (and likely been even more sleepy). Video in comments.

*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Julia's official fundraisers: T-shirts: | Jewelry: 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 <3

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When Julia was doing so well, as I told you, I had not posted anything until about two days ago, but I was celebrating with you like mad, and thanking God for all the amazing things she could do, sitting up by herself, coloring, playing with her brother, all of it. Nothing there was sad and I am so sorry people were giving you sad emojis. That's not right and makes no sense, but perhaps they are people who love the sad and have difficulty rejoicing. I rejoiced with every new thing she did!

I'm sorry things are not going so well right now, but we don't yet know what the newer chemo may be doing that is good, so…

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