Posting early: headed down to the hospital at an odd time tonight, so wanted to get this up now.
Kind of a rough day for Julia. Fine medically, just battling through this mucus / vomiting stuff still. She threw up a few times (requiring a bonus bath and string change -- her favorite). They gave her some extra meds and they seemed to help the nausea. As far as everyone can tell, gagging on the mucus is causing the vomiting - there is nothing IN her stomach ever, and she's mostly throwing up snot. We're just still trying to find a medication she responds to, and I have several more suggestions after last night's post that I will bring up with her team!
They attempted to put her back on her new HME today... she didn't tolerate it. She was immediately agitated and was working to breathe (more than they want her to), so they took her off after only 15 minutes. That's always a bummer, but of course I agree they did the right thing. We don't want to exhaust her.
OT was in earlier and they actually got Julia to the couch! Reed was not in the room for this so I have NO PICTURES! So bummed! They got Julia seated on the edge of the couch, which she absolutely hated at first, but then they wheeled up a table with some coloring stuff, and she was pretty content for a while =) I guess they were working on core strength and stabilization muscles. I'm SO HAPPY for 2 days in a row out of bed! I just want her out of bed EVERY DAY. Even 15 minutes if she's tired. Something. (I'm trying to be patient and understanding, but it drives me absolutely crazy anytime I hear she hasn't left the bed all day... it's an ongoing... conversation.)
Gabriel still has a raspy cough. No one thinks it's anything more than a cold - he was all snotty for a few days, and now it's down in his lungs. But, he's been with Aunt Charlene and family since last-last Tuesday, so we haven't seen him in person in 10 days. I called his pediatrician, explained the symptoms, and asked when he'd no longer be contagious. She said, "Oh, he's fine now." So I reminded her that his 2 year old sister is going through chemo and has no immune system. That changed things. She consulted with the nurse, and they still didn't seem confident, so they talked to a few of the doctors and called me back. They said he's LIKELY alright, "as long as he doesn't cough on you" (he's 1); and, "as long as he wears a mask" (...he's 1). He will absolutely cough on me, and will likely stick his snot fingers in my mouth.
Even with that, they said he's LIKELY fine - everyone knows this sort of cough can linger for weeks (months) beyond the contagious period. So Reed and I talked about it, but decided we just can't risk it (Friday's are usually our evening with the 3 of us together). If it were JUST a cough, maybe we could be "really careful", but he still has a runny nose. We can't risk transmitting a brand new germ to Julia right as she goes into round 10 of chemo. She's (possibly) almost done chemo... now isn't the time. So... tea party it is =) Oh, and maybe some more grocery shopping with all the new cool food she has!
Just since people are SO invested in my kids' happiness... Charlene has been with Gabriel since he was born; watched him nearly every weekday since infancy; and took him the day we went to the ER with Julia (and kept him for months when things were bad). The point being - he is absolutely, totally, and completely HAPPY with this unusual family dynamic. It's all he's known. (And bonus: trampoline and pool.) So please no one think he's in any way like, crying himself to sleep. In fact, my FaceTimes with him go something like, "Mommy! Hi! *kisses phone* Down. Elephant. OK Bye!" And then he wanders off. He's fine.
Speaking of FaceTime. I've received several Apple / iTunes gift cards over Julia's battle (thank you!) I was't sure what to do with them since the hospital owns her iPad. SO! A few days ago I pooled them together and got Julia a refurbished iPad - WiFi + Cellular. It should arrive Monday. I picked up a child proof case (tell that to my 3x shattered iPhone), and a blue-light screen protector. So now Julia will have her OWN iPad! We can install anything we want on it - like other fun things to do (besides YouTube), some communication apps, and best of all, I'm going to setup icons for FaceTime so she can call people whenever she wants! I am SO EXCITED for her. I warned Charlene that if I do this, she and Gabriel will likely get FaceTimed 50x a day. And she's all-in. I'll also add myself (of course), and I think Aiden and Riley (Alicia's kids).
I am just so excited for her. And for me. I can't wait for the first time I get an actual legit "Julia call" to my phone <3 I know it will help get her through these next ~2 months of chemo treatment without feeling so isolated.
So THANK YOU for the Apple gift cards! They have finally gone to use <3 <3
Video in comments tonight: She had been snoozing but woke herself up for cartoons, so I have a random 'sleepy Julia' video. It happens to show how easily she can disconnect her trach, so I thought that might be interesting to see. You can hear the machine start alarming, and the change in pressure causes her to cough (and gag a bit), but she's in absolutely no danger and isn't struggling to breathe. I also added one from exactly 1 year ago... she loves her little brother <3
YouTube: https://youtu.be/tny1_Y23mms .
. ********** ~~ Julia Adams ~~ *********** ************ Official Links ************** **************************************
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