A decent day for Julia despite no sleep. She went to bed around 5am and only slept a few hours, and then took one 40 minute crap-nap. So now it's 10pm and her eyes are bloodshot. She's just so tried. But vitals have been OK - heart rate is high, but no one is surprised. They did an IV stick to get some labs and they got it on the first try! Thankfully! All her counts are recovering nicely. Secretions are still out of control, but slightly better than yesterday. They upped one of her secretion medicines a touch. They said without a trach, they could go much more aggressively, but they need to be careful not to thicken them too much, or they could clog her trach (and that is definitely NOT what we want!). But there are still options to try. Speech therapy was in again today for about 30 minutes. They continued to work on her communication - just examples and repetition. She was mostly cooperative. She's doing great with pointing to tissue. The next few concepts are "like" "don't like" and "stop". She hasn't used any of those in a meaningful way yet, but... working on it. She did get frustrated a few times and threw the board. I got surprised with a trach change again. It went decent. I didn't need all the PICU doctors in the doorway =) Respiratory was here, along with the nurse educator. I pulled out again. Nowhere near attempting to put it in. And she barfed midway through it, like, over and over, so that sucked. I stepped back and let the respiratory therapist figure it out, so... not quite there yet. But in general, it wasn't horrible. She played with a magnetic Peppa dress up that she thought was pretty cool =) It was just a Peppa doll with a few outfits and accessories. She found a microphone that was like, 1 inch big, and she put it up to her mouth and started laughing <3 I assume she saw that on the cartoon because we certainly didn't show her what a microphone is! She thought that was the best ever - pix tonight <3 ~~~~
Information request: I'm talking with a family whose child is recently on hospice (cancer). They would like to give the alternative treatments Julia uses an honest shot, but the problem is their child is not showing much interest in food/water. Hospice says it's their body shutting down, and that they will not give them a feeding tube because that would only prolong the inevitable. Of course they don't recognize alternative medicines and active treatment, and there are no options medically available (no chemo / radiation / clinical trials, etc.). So given that, what rights does this family have to insist upon this 'unnecessary' intervention? Possible while on hospice? Do they need to pull their child off hospice? Is that possible when there are no recognized treatment options? Julia would have died without her feeding tube - keeping her body going was obviously essential at buying time for treatment to work. This family has a phone call tomorrow, so any insight/suggestions are really appreciated. Thank you! ~~~~ Video in comment of FaceTime with Aunt Charlene and brother! First time she's seeing him on the trampoline and she couldn't decide if she wanted to laugh or O face! <3 <3 <3
YouTube: https://youtu.be/8L5GMRRw13w .
. ********** ~~ 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