Round 11 of chemo - day 1. Very tired, as expected. And her secretions are absolutely out of control today. All she's done is spit and sneeze. The increase happened before chemo was administered, so we're thinking it might be due to the excess fluids she receives prior (which started last night). They're going to up her secretion med, and try the t-piece instead of the HME tomorrow (since the HME is known to increase secretions as well). Fluids + chemo + HME might just be a bit too much.
In the interest of assisting her acute rehab candidacy, PT is starting her on a 5-day set schedule (M-F). So either PT, OT or Speech will work with Julia every day at a set time, even if she's sleeping or grumpy. In the past, waking her up has not gone well, and the sessions have only lasted 10 minutes. But in order for insurance to cover acute rehab, she needs to prove she can benefit... which means participating every day. It will definitely be easier when not on chemo, but they want to prep her as much as they can over these next two months.
So speech was in today, and they had to wake up the SLEEPIEST BABY. She was OUT. Not only is it her first day of chemo, which wipes her out, but it's the first day of forcing a schedule rather than just letting her sleep the day away. So they managed to get 30 minutes of limited participation out of her. They tried to work with a magnetic book, but Julia wasn't really doing much, she just sleepily watched daddy arrange the pieces. But for day 1, with the considerations, and a 2 year old... we'll say it went well =) And the minute it was over she went back to sleep.
Tonight, for the first time since her November surgery, they will not be putting her on her breathing rate while she sleeps. She typically has daytime settings and nighttime settings on the vent (or no settings if she's on the HME). She works a bit harder during the day, and then gets a break at night. Tonight they are removing the rate, which is usually set at 10. So in the past, if the vent detected she was breathing more slowly than 10-breaths-per-minute, it would start giving her guaranteed breaths. Tonight she won't get that, so even in her deepest sleep, she'll need to initiate all her own breaths. (When the vent detects her breathing, it will still assist with some pressure). And of course there are alarms if she starts to struggle, and they can turn her settings right back on. No one knows what her future holds as far as needing the trach/vent, but this is definitely a step in the direction of weaning. I really hope she tolerates it!
Video in comments of the SLEEPIEST Julia being woken up for her therapy. Look at those smiles the second she wakes up and sees Reed! <3 <3 (And you'll notice her face is puffy - that's from the fluids that run during chemo.) Oh, and last night Reed said Julia tried to outsmart the nurse and pretend to be sleeping when she came in... but then actually fell sleep. Tricked herself!
YouTube: https://youtu.be/GrB6EzahC5U .
. ********** ~~ 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