August 8, 2019
Day 3 of 5 for chemo.
She's been pretty OK. Lots of barf. Lots of exploding diapers (even that's an understatement). But despite constantly needing to be cleaned and changed, she's been in a surprisingly good mood. She had a nice coloring session with speech therapy. They tried to get her to do the communication board, but she wasn't super interested. But really great news for Julia and mom!
Julia has been a ROCK STAR on her HME! Two weeks ago they struggled to keep her on for 15 minutes; then we got 2.5 hours out of her. Today she was on for more than ELEVEN hours! And it's the actual HME, not the alternative device they were trying. She had it on all during her play time, through a 3-hour nap, AND during her trach change! Everyone is just thrilled at the progress. They say from a respiratory standpoint, it's really fantastic.
And for me... the nurse educator came in to talk to me, and asked about the trach that I've been refusing to touch. I feel like everyone has been kind of tip-toeing around it. I get phone calls from the nurses, and social workers, and we talk about it here... all about when I will even consider touching it again. I haven't even changed her strings since things went bad several weeks ago (I've just recently managed to stay in the room).
So the educator asked, if I had an actual ENT doctor in here... would I consider trying again. The ENT (Ear Nose Throat) doctors are like, THE doctors that would be involved in any airway issues. They gave her the trach, they did all her difficult intubations (due to spine fusion), they've handled all the scoping to determine surgery recovery. They are who would be called for any emergencies. It looks like, 2 seconds of thinking, and I said "Yes". If an ENT doctor was here, I would probably feel comfortable enough touching the trach.
I think that caught the educator off guard - she expected me to say no. And then we found out the trach change needed to happen tonight (so in like, 10 minutes from that conversation), so she said she'd see what she could do.
I setup for the trach change. They couldn't get an ENT doctor on such short notice, but they had the nurse, the respiratory therapists, 2 nurse practitioners, and 2 PICU attendings who came over from down the hall. I had an entire TEAM of doctors standing in the doorway to support me. They gave her extra oxygen (so her alarm wouldn't sound); they silenced the other alarms so I wouldn't have hear them (they had enough people staring at the monitors). It was so much overkill that it's hard not to laugh at it now. But... I felt so confident. There's no way I could screw up something so bad that 6 professionals couldn't fix it... and they weren't a 'code blue' away - they were literally blocking the door (I couldn't run if I wanted to!)
So I did it. I haven't even touched the strings again, but I went right for the trach change. I took out, Reed put in, and it went really well. The educator made sure to comment on my shaking hands and sweaty face (I think she was surprised I was actually that nervous), but I found it to be comic relief.
Anyway. It was really great. I'm so glad I did it. I could have avoided that forever. They were all so supportive. I know they had a million better things to do, but they said they'll all be back the next time I need to do a trach change. Maybe we'll just drop one doctor each week until i'm down to the support a normal person needs.
(And the PICU attending was so happy to see Julia again <3 He commented on how big she's gotten and how great she looked! The last time he saw her... things were very bad. So he was just thrilled to be a part of it.)
And Julia just opened FaceTime on her iPad all by herself and called Charlene (at 11pm) - she's very proud of herself.
Video in comments of a HAPPY baby right after her bath and trach change =)
YouTube: https://youtu.be/nH1_1Dphshw .
. ********** ~~ 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