March 9, 2020
Another stable day. Heart rate 170s, BP currently 86/49. No fevers since her spike a few days ago. She got some platelets since she was low.
They also haven't mentioned the green secretions from her stoma today or yesterday. It was unclear to me whether these were coming out of her stoma or her trach, which would suggest two different things (due to her having an inflated cuff (balloon) cutting off her upper and lower airway). If the secretions were coming out of her trach, that would suggest whatever it is is in her lungs. If they were coming out of the stoma, that might suggest whatever it is is just dripping down from her mouth/nose/throat and possibly NOT in her airway, which is the better of the two options.
They did find a few issues with the sump again today (that's the tube in her nose). So perhaps that has intermittently not been pumping correctly, which has allowed some of this bile to slip down her trachea and out the stoma. That's the hope.
She has two pressure wounds on either side of her neck, under the trach ties. They are small, but CHOP is very careful about trach-related sores, as they can't just "air out" like others can, or else nothing would keep the trach in! But they noted that one appears to have healed a bit... which is super awesome since they don't believe her skin is healing really at all. But... the other got a little bit worse, so who knows. But they are keeping everything super well medicated and covered, and are doing the best they can to prevent further injury and promote healing.
And Reed was pretty sure early this morning she twitched her eye a little bit and intently looked at him <3 I haven't seen it yet, but that's great to hear. Lots of sleeping today, but also some cartoon time.
Not Julia related:
After my post last night, many people said they'd like to do something for their local children's hospital. I know Julia's story has been a lot of people's first real look at childhood cancer. Or I guess I should more correctly say medically frail kids. ...I still don't think that encompasses the whole. I'm sure there is a term I'm just missing. I personally know cancer, but kids are in children's hospitals for all kinds of non-cancer related illnesses and disabilities. So, I'm speaking about all of those kids. Kids fighting things and overcoming obstacles I don't even know exist.
Through Julia's story, everyone sees her surrounded with so much love and support, and at least one parent almost always at her bedside. But the reality is... there are kids who suffer through treatment for years with no one. Many don't end up beating their disease, and they do it alone.
I can't imagine. Like, even as an adult medical stuff can be scary and overwhelming. Seriously, you should see my dentist try to check for a cavity. Good thing his specialty is kids, because I act like a toddler. A toddler with 30 years of fear, anxiety, horror movies, and an imagination... so worse than a toddler.
But kids in a hospital go through so much more. Constant IVs, beeping machines, catheters, MRIs, sedation, surgeries, stuck in halos, chemo... literally put in a wire mask and bolted to a table for radiation. Medications that make their body feel weird and they don't understand why. Kids too young, or kids unable to speak and communicate (like Julia).
Julia's too young to appreciate pretty much everything she's going through and all the support our family has been given, but there are kids who are old enough to KNOW they are sick and to KNOW they don't have anyone visiting.
So, it's a super fabulous idea for you to get involved with our local Children's Hospital. (I think) many have a Child Life department - and they would be who to go through to find out needs, both gifts and volunteer related.
Here's an example: Child Life, in addition to playing with the sick kids, scheduling birthday parties, supporting patients through scary procedures, talking to siblings in age-appropriate words about really hard topics... they also help families in my situation make keepsakes.
Over the holidays CHOP had some really cool new... glitter... embossing thing, that made typical hand-print-on-canvass look really cool. The hand print is done in an invisible paint, and then some sort of glitter is sprinkled on it, and then it's blasted with a heat gun, and the end results is shiny and beautiful! We have a gorgeous glittery hand print in a frame for us to take out for the holidays.
But, they mentioned this sort of thing is in super short supply. So we had to go real easy on the glitter, and then scrape everything back into the jar for the next person.
And, I'm making assumptions here... but I believe CHOP has a pretty well-funded Child Life department, compared to some other hospital's in the country / world. Do all US children's hospitals even have the necessary supplies to offer such beautiful keepsakes to families? My guess is no.
Also, I found out that (for obvious reasons), lots of craft-related toys MUST stay with the patient. Like, it makes total sense, but I never thought about it. They can't just re-pack up crayons and bring them to the next possibly-immune-compromised sick child. But when Julia first showed an interest in coloring, in walked Child Life with a big drawing pad and a brand new pack of crayons. How is their supply of one-time use things like these (especially those with a theme - like Paw Patrol)? I'm not sure.
With Julia, all I had to do was mention she starting liking "some pig named Peppa", and by the next week she could have opened a Peppa Gift Shop with how much Peppa stuff she received! (Much was donated <3) But I think of kids who have favorite characters and shows, but Child Life isn't stocked with those favorites, and the kids don't have family or a 100,000 online friends to send them stuff. So they just go without.
How many little girls out there also love Peppa, but have no one to bring them Peppa stuff?
And doesn't that thought seriously hurt your heart? These kids can be fighting life threatening illnesses... and a simple Peppa doll could bring them such joy, and they will never get it.
I can't tell you how many laughs and smiles Julia got out of some dumb plastic tomato. Seriously. She was obsessed with her grocery basket. Someone gave it to her - I don't remember if it was an online friend, or Child Life... but someones thoughtful gift at some point made a 2 year old with cancer SUPER happy.
So I emailed Child Life today and let them know I'd like to give a short list of things they are always in need of to Julia's online friends. I will post that in an updated as soon as they get back to me.
But I can tell you that you can make a HUGE difference. Toys, art supplies, keepsake supplies, iPad holders... children's hospitals are definitely in need. What a great thing to do for yourself or to teach your kids. Maybe once a year do a small local collection and take your kids to drop off toys for sick children (I bet they would love to pick out their favorites... and if THEY love them, some other kid will love them!) I've also seen a ton of local business put those donation boxes out in their lobby - it helps when they are specific, like "Looking for Barbie stuff for CHOP". Giving specifics helps recruit people better than something generic.
Hopefully later this year Gabriel can wheel in a bunch of Paw Patrol stuff <3 I know that's a huge hit with the kids on the floor.
No video tonight.
PS. Thank you to my neighbor for dropping off chocolate chip cookies after my comment last night! <3 <3
*********** ~~ 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