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December 3, 2018

Whew. Today was rough. The breathing tube came out without issue around 9:30 this morning. She was NOT happy!

She's doing as-expected, being a 2 year old who we can't explain anything to. Her voice is very hoarse, and we only got a few quiet words out of her today ("no" and "mama"). She was trying to ask for something but we couldn't understand her. We think she was asking for food =( She had been so constipated she was throwing up what was going in through the feeding tube the last few days, and then her feeds were stopped at midnight in preparation for the removal... poor girl hasn't had enough food in days! We're pretty sure she was asking for bananas (mamanas, as she calls them), but obviously we couldn't give her any =( She spiked a 102 fever this evening as well, so her feeding was delayed even longer just in case. More blood work and cultures were being sent down. Currently that's just being treated with Tylenol and she's responding.

She's still on the pain relief and sedation, but both are being weened. They said they will be weening the drugs for weeks since she was on such high dosages. The scariest part of her recovery today is all the excess fluid in her lungs, due to the breathing tube and pneumonia. She's so weak she can't cough it up AND she can't turn her head even an inch. So it's terrifying seeing her start to choke on it and the nurses have to run in and suction it out. I swear I was on the verge of a panic attack the entire time I was in that room today. Thank God Reed is able to stay totally calm in that situation... he's the perfect person to have to live in a hospital room with beeps and alarms constantly going off.

We tried our best to get a smile out of her, but no luck. The child-life specialists say it's going to be a rough week with her getting used to the halo as her sedation lessens and she becomes more aware. She so clearly wants to move! She wants to sit up, i'm sure she wants to be hugged, she wants to roll over and walk... but she can't. She winces in pain when they even lift her butt for a diaper change, so she's definitely not ready to change positions yet.

But she's happy to have her tiger in her mouth again, and she's had someone's hand to death-grip nearly all day today. So that's something.

Also, now that her eyes are open, we confirmed her left eye is still funny. So unfortunately what they got of the tumor didn't fix that. What's left over must be the part pressing on the optical nerve. So her left eye still can't look further left than center-line. Her right eye can look both directions, so it makes her look cross-eyed if she looks left. That's disappointing. I was so hopeful that the surgery would put a stop to the visual symptoms we started getting.

It just reminds me that with everything she's gone through, and recovering from the brain and spinal surgeries, and getting used to the halo, and learning to swallow and move again... her actual fight against cancer hasn't even started. Looking at her so weak and fragile... I can't believe we still have to pump her full of poison.

Ugh. Just a really down day after having to leave her like that. Hopefully tomorrow will go better.

Attaching a sweet picture of her and brother seeing each other for the first time, and a picture of her MASSIVE (tube-free) pouty face. She gave the biggest frown every time they had to look in her mouth. At least she's still has her adorableness

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