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December 6, 2018

Updated: Dec 22, 2018

Not much has changed today. Julia is stable. Her lungs are clearing up while on the breathing tube, as expected, but the doctors have determined that nothing will be different from last time taking her off - she will be too weak to cough up the secretions. Reed signed the consent for the trach. The earliest they can get her in is early next week, so she will remain sedated on the breathing tube until then. No physical therapy is being done in her current state. They've also decided to do a g tube at the same time. That's another new step (and another hole in her body), but they said it will allow them to get better nutrition directly to her stomach and it will increase her comfort level by not having a feeding tube down her nose. They still plan on starting a lesser-intense chemo at the end of next week. It's not as hard as they wanted to hit right off the bat, but she's just too weak and they believe something is better than nothing.

I so hope this trach is temporary. The doctors say she doesn't have a lung or breathing problem - she has a weakness problem. So ideally, if she regains her strength and lung capacity, the trach could come out at some point. Maybe in a few months.

So I guess the most immediate step is hoping she stays stable throughout the weekend until the surgery can be performed.

Reed is with her 24/7 and is holding her hand whenever she's awake. The PICU has a really handy iPad arm, that holds the iPad at any angle, so she can have it hanging right over her face to watch cartoons. She can fight the sedation enough for some toddler songs =) She is always holding her pacifiers, she looks at daddy, and she still has the biggest pout when they need to suction (but she opens her mouth for cleanings because she's a sweetheart). She's also started showing some of her normal attitude by pointing down toward the blanket as soon as the nurses move it to scan her bracelet =) So it's clear our little girl is still in there... we just need to get past these awful steps.

Thanks to everyone who sends me private messages of encouragement when I have a less-than-awesome post. This is such a roller coaster of emotion. Mostly from bad to worse, but trying to turn the mindset around.

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