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December 5, 2018

Not a great day today, unfortunately. Julia is back on the breathing tube. Yesterday she was struggling to breathe and her oxygen saturation kept getting progressively worse, and in the early hours of the morning they decided to put it back in. The problem is all the excess secretions. She's just not strong enough to cough them up, and they are really filling up her lungs and throat. The secretions were so thick, they were sticking to the sides of her throat and had to be scraped out just to get the camera down. The problem really is the throat surgery. The nurses are unable to suction deep enough down to get what they need to get, due to fear of affecting the surgery location. So they were really counting on her to cough, which she's not doing, either due to weakness or pain.

We just talked with the doctor here, and the whole team is trying to decide what is the best way to stop this cycle. She's too weak to do the coughing she needs to do, and keeping her sedated with the breathing tube only makes her weaker. The longer she's intubated, the worse chance she has of being able to do any productive coughing. So of course a trach was brought up today. We'll get final word tomorrow, but it seems to be the direction we're moving.

Other than another surgery, more anesthesia, more pain, and cutting her open yet again, there are many benefits to having a trach in her case. Mostly, it would allow her to be off sedation and start getting strong through physical therapy and playing, which would allow us to start chemo earlier. The negative of course is... a trach. The nurse said she will likely not be able to eat, or talk. Possibly temporarily, possibly permanently. She said some kids learn how to eat, and some learn how to talk. But I'm losing faith that Julia's going to be part of any of these good statistics. I'm very sad thinking that I might have heard her sweet voice for the last time several weeks ago and didn't even know it.

The good news is she's very comfortable today. She was really struggling to breathe yesterday and last night. It looked like she was constantly running. Now she takes nice long deep breaths and has been sleeping most of the day.

I guess we'll know tomorrow what the final decision is: whether they want to try this process of weening her off the tube once more, or if it's straight to a more permanent solution.

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