Short Julia update today (then lots about her trach). Julia threw up twice around 6am and then not again. But she was up all night and slept from 6am to 6pm! So she's been out ALL DAY. Her vitals have been solid for over a week. She woke up super fussy, and Reed cycled through all the things she might want to do. She said no to everything until... Peppa Pig! That made her nice and happy =) So she watched Peppa Pig for a good two hours. Then her and daddy read every book she has, at least once. She gave a giggle or two, but really was just grumpy.
They FINALLY changed her nutrition! She is on an organic, real-food, plant-based formula now. I've gotten so much feedback that this has REALLY helped other kids with cancer, so I'm excited to see if there is any change.
Tonight's picture is of Julia refusing to give up Reed's hand last night <3 <3 <3
*** That's all for Julia update tonight <3 ***
Many people have asked about the trach - why she got it, what it's doing, and when it can come out.
She got the trach initially because her unique circumstances made coming off the breathing tube (after surgery) difficult. Having a breathing tube can cause secretions, because it's a foreign body and that's how your body protects itself. She ALSO had several common hospital/tube/surgery-related lung infections at that time (like pneumonia) which ALSO cause secretions. A normal, healthy person can cough these up and help clear their airway. Julia couldn't due to the weakness of back-to-back surgeries and extended sedation. When THAT happens, a normal, healthy person can get 'suctioned' (where they stick a flimsy sucky-tube in your throat/mouth and suck out the goo for you). Either way - you get it out. Unfortunately for Julia, the location of her tumor-removal surgery (at the back of her throat) made it so they were unable to suction. So she was too weak to cough AND she was too fragile to suction. So she could not get the secretions out (the secretions make it very difficult to breathe, and can actually form physical clumps blocking your airway - she had many that had to be scraped out - they can be a big deal).
They did try to take Julia's breathing tube out in December, but she only lasted about 24 hours before she struggled to breathe around all the secretions that she couldn't cough up / couldn't get sucked out. So they put her back on the breathing tube. When you're ON a breathing tube (tube in your mouth and down your airway), you need to have some sort of sedation, because it's super miserable. Like... gagging, choking, want-to-rip-it-out miserable. So they put the tube back in, and upped her sedation. When you're sedated longer, you get weaker. ...She was already too weak to cough, and there was no end in site for her 'fragile surgical location' (for suctioning), so it was an endless circle. She'd never be able to regain strength while sedated with the breathing tube, to be able to cough on her own and clear her secretions enough to have the tube removed. So because of that, they made the decision to give her the trach, TEMPORARILY.
A few weeks after the trach, she was seemingly doing better and not needing any vent support (more on that in a minute). I believed they toyed with the idea of removing the trach at this time, but because she was in the halo neck brace, they decided it was safer to have it in, since it was already in. Apparently the normal oxygen mask (for emergency breathing support) does not fit around a halo neck brace. And since she had needed that support in the past, it was not unreasonable to assume she might need it in the future. So because the trach was in, and healed, and she was used to it, they decided to keep it in at least until the halo was off - for safety and convenience.
And then early January the cancer growth exploded, her health took a dive, and obviously the trach never came out. Then add on several more months of sedation / unconsciousness (due to cancer)... and that just compounded the weakness problem. So now she's back to being too weak to clear her own secretions, so the trach cannot come out right now.
So the trach is just the part in the throat. It can be capped if you don't need the ventilator (vent) for breathing support. As I understand it, the vent can provide support to Julia in up to 3 ways (I will apologize in advance to any respiratory therapists reading my explanation.)
1.) It can give her extra oxygen. If her lungs, for whatever reason (illness, condition, side-effect of cancer, side-effect of brain injury) are not passing along enough oxygen, it can be given as a supplement. Julia had this when she was on "full vent support" (right out of surgery and when her health got bad). She no longer gets any extra oxygen.
2.) It can force her to take breaths. The vent can be set with a certain number of mandatory breaths per minute. Julia's is set at 10. So no matter what Julia's body decides to do, the vent WILL force her to breathe 10 times a minute. The vent USED to be breathing fully for Julia, it's not anymore. It will make sure she gets at least 10 a minute, but she's been "breathing over the vent" for two months now - meaning she's taking more than 10 breaths a minute (usually like, 17-20), in which case the vent does not do anything in this area. It's just there as a safety net.
3. It can provide pressure support. This means when the vent detects her taking a breath (because it's fancy and can do that), it just gives her a little extra boost of air to assist in inflating her lungs. It also keeps a 'baseline' of pressure in her lungs when she's not breathing (she uses this, but it's minimal). In Julia's case (and I think most cases?) this is used to just ease the effort of breathing in a weakened person. Breathing fully on her own would exhaust her, and possibly lead to complications in the near future, and it's also hard work. So this takes some of the effort away, and provides comfort. Julia is currently on a small amount of pressure support during the day, and a higher amount at night (when she's exhausted from working to breathe during the day / and wants to be able to sleep comfortably). So she has "day time settings" and "night time settings".
If at ANY time, Julia is struggling to breathe (anything from being extra exhausted after a round of chemo to having a major medical event), they can literally up her settings in seconds, and she'll be good and safe (a major plus side to having a trach - because otherwise they'd have to do an emergency intubation). And as a side note - in the videos, that's the sound you can hear when she breathes - it's the vent pushing additional air through the tube when it detects her taking a breath.
Julia is currently only getting "minimal pressure support" 24/7. Their goal is to give her the absolute smallest amount of support she can comfortably have. So if she does well on these settings for 2 weeks, they might bump down the extra pressure a notch and try that setting out. I understand it's common in people, as they regain some strength, to fully disconnect the vent during the day (allowing them to breathe on their own), and just hook them up to the vent at night so they get a restful / rehabilitating night's sleep.
If I understand the doctors correctly, once Julia is 100% off ALL vent support for 3 months, without any hiccups, they consider removing the trach. So, we're not there yet. But they do continue to very slowly lower her settings, as she tolerates it - it's difficult because she's so weak from chemo.
But still no one has even suggested that this trach is permanent. "You never know", but it was originally a weakness problem, and is still believed to be a weakness problem. We see Julia is regaining strength (by the day - which is nuts!), so there is a really good chance that in the near future - weeks / months - she might be vent-free and starting the countdown to trach removal.
Hopefully that answered some questions about her trach!
. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************
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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