March 11, 2020
Post kind of all over the place again.
She's still hanging on, but pretty out of it today. I've seen her eye open twice, but it didn't do much besides stare straight ahead for a few seconds before closing. If I get right in front of it, it looks like she tries to twitch it. (We know the original tumor is affecting the optic nerve, so this is likely just continued progression).
I briefly spoke with some doctors today. They said it is not out of the question for it to be tumor in the back of her throat, or inflammation from tumor. The PICU doctor said he would look at the images from yesterday, because he didn't see it himself, but I haven't spoken with him again. Either way they can't do anything about it, so I guess I don't really care.
She now has a suction in her mouth to help get out of some of the reflux (it's not down her throat, just in her mouth like at a dentist office). I'm sure that feels better than having it dribble down her chin. Though she keeps nibbling at the tube and sometimes is crafty enough to spit it out.
So it seems what is happening is there is so much pressure in her abdomen, that it's just easier for the bile to come up her throat rather than out her g-tube. I asked if they could do IV Pepcid, just in case she's got like, horrible heart burn going on. So the nurse is going to confirm the Morphine isn't handling that already (Morphine is fantastic at some discomforts / not so great at others), and he will see if the Pepcid can get added just in case.
I spoke with her primary for a while, and we're in agreement that we're at a point we can no longer use her vitals or reactions to tell us whether or not she's in pain. She doesn't appear to be in pain... but for someone this paralyzed, with possibly not-correctly-functioning vitals... what would that even look like? And she's been so out of it this last week, it's not like she's spending 20+ minutes a day (or any minutes a day) watching cartoons. I have them on in front of her, but I don't even know if she's aware of them.
So she would like to add IV sedation to the Morphine.
I believe I'm in agreement, but wow... this decision hurts. Like, I still see her pretty little mouth move throughout the day. And she does open her eye when I touch her head, but only for a second.
Saying 'yes' to IV sedation, would be me agreeing to never see this again. It wouldn't kill her, but it would put her to sleep (and make her forget) until she dies. It would likely lower her already-low blood pressure, which is currently 58/36, with a full dose of epinephrine.
So, that is the choice we're weighing right now. Our doctors confirmed that they still believe either decision is ethical and moral. They are not at a point where they believe she's in pain, they just can no longer be sure she's not. So they're leaving it up to us. We will probably do it, but we need to talk about it more.
Not really the post I wanted to follow with the Child Life info... but we might not have a ton of time, and it's really great info for other kids.
I talked to our Child Life specialist for quite a while today. She confirmed they are ALWAYS in need of donations (here at CHOP and all other children's hospitals). So I took some notes:
--- Donate at all times of year, not just Christmas. Around Christmas time CHOP can get literal truckloads of donations, but by summer / end of summer, their stash is pretty bare.
--- Most art supplies, paper products (coloring books), and things like nail polish are one-kid-use for germ reasons. Even if someone only stays in a room for 3 days... they either need to remember to take home their donations or they get thrown out. Because of this, they are ALWAYS in need of art supplies.
--- The ICU specifically makes use of those little plastic lap / art desks for the kids. (Julia's pink and purple ones made an appearance in many pictures over the summer.)
--- They're always looking for ways to help families make memories, which often includes art canvasses, paint, paint markers, finger printing kits (like for newborns), and that embossing stuff I mentioned. She said the Child Life department LOVES Julia's charm bracelet, so they've been talking about how to make that a reality for other kids as well.
--- It is difficult (though not impossible) for them to accept non-factory-wrapped fabric items (think pillow cases, hand-made blankets, hats, socks, etc.) With immune-compromised kids in mind, they just need to know the items are germ/irritant-free. They say in some cases they can accept new hand-made items if they were properly washed then immediately individually sealed in a zip-lock bag.
--- PLASTIC toys are what they love. They can be wiped down and sanitized and used again and again. She stressed that often baby dolls have a bit of fabric (like on their belly) which makes them technically one-kid-use. And baby dolls are a huge hit here, especially to help younger kids understand procedures. So plastic ones are perfect.
--- Speaking of baby dolls, they are in desperate need of multicultural baby dolls. Most donated dolls are white, so they really love when they have options that represent other races and cultures.
--- She said that most people who think of patients in a children's hospital picture young school aged kids (5-8) so that's who they end up shopping for. Most people don't seem to think about infants and teens.
--- Infants: I've mentioned in a few of my posts that there are kids in hospitals with no one (and sadly many nurses have confirmed that in my comments). So the crib soothers are in super high demand. Hospitals don't have the staff on hand to always be soothing sick infants =( So these devices that vibrate the crib, play music, and mesmerize with a fish tank are like gold for NICUs.
--- Teens: What entertains a teenager these days? Besides their phone. The hospital loves things like advanced lego sets, puzzles, and board games. And things you might not even think of, like smart phone accessories. If a kid gets admitted to the hospital and doesn't have earbuds or a charging cable, Child Life loves to have those on hand to get them comfortable quickly.
--- iPads are difficult at CHOP, and I assume elsewhere, due to security reasons, so they make use of the portable DVD players constantly (link below). But when they break... they break. Way more expensive to replace.
--- They can always make use of all gift cards, and REALLY appreciate when those show up. They use Amazon / Visa gift cards to fill gaps in projects they want to do. They use Starbucks gift cards to grab coffee and baked goods for weekly parents support groups. They use other small gift cards as gifts for older kids who find themselves in the ICU for birthdays or Christmas. (Two times when things were especially difficult with Julia, we were surprised with a $50 local restaurant gift card to encourage us to take time for ourselves... that had to have been donated.)
--- They love having decorations to throw birthday parties (remember, they can't reuse most of that stuff). So small little "birthday in a box" kits, with some matching cups, plates, and streamers are perfect. They used one of these to decorate the room for Julia's big birthday bash in November <3 And like... who thinks about donating a birthday in a box to a children's hospital? But they said you better believe when they need to throw an impromptu birthday party, the kids are THRILLED with they get wheeled back from surgery and their room is decorated. If they have one of their favorite character, that's a super bonus!
--- And they especially like getting popular character stuff (any sort of item). Like Peppa Pig, Marvel, Wonder Woman, etc. If your kid is obsessed with it at home, there's a kid at the hospital obsessed with it too =)
So whatever sort of category floats your boat: Art supplies, birthday parties, action figures, custom blankets, infant-focused, tech accessories... CHOP or your local hospital will absolutely make use of it.
Specifically for CHOP, I have this information:
--- Wish list: https://www.chop.edu/centers-programs/child-life-education-and-creative-arts-therapy/donate-toys
She also mentioned they've tested out a TON of products, and these work best for various reasons. So if you're looking for some tried-and-true / in-demand product links, here you go:
--- Vibrating Crib Soother: https://amzn.to/2IGHDwI
--- Musical Crib Aquarium: https://amzn.to/2Q4HiYL
--- Portable DVD Player: https://amzn.to/2W5HMSg
--- Musical Projector: https://amzn.to/38IiQmH
--- Lots to Love Baby Dolls: https://amzn.to/2vYwe8U
--- Embossing powder: https://amzn.to/33dlJ up or https://amzn.to/2vYg8w1
And I have to mention that CHOP's Child Life is so thankful that this information is even getting out to Julia's Army (which they're well aware of!). She mentioned that if people are donating to CHOP, consider sending it directly to them and reference Julia so they know. She said she'll keep me updated on what shows up because of Julia <3 The 7th floor houses both units Julia has spent her time in here, the PICU (Pediatric ICU) and PCU (Progressive Care Unit):
Children's Hospital of Philadelphia
3401 Civic Center Blvd
7th Floor Child Life - in honor of Julia Adams (or something)
Philadelphia, PA 19104
In non-extremely-depressing news, Reed said Gabriel had a really wonderful sleepover. They slept together in Reed's bed, and Reed woke up to Gabriel laughing and hitting him in the face with his dinosaur. <3
Picture: one of Julia's online friends named a star after her <3 <3 Pictured.
No video tonight.
*********** ~~ Julia Adams ~~ ***********
************* Official Links **************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers:
T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx
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 2018. You can find them all on my Facebook page or Julia's website. A current summary can be found here: juliaadamscancerfund.org/summary