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November 30, 2018

Today marks one month since we took Julia to the ER with a stiff neck. I can't believe I haven't had my girl home in that long 😞

I talked to the nurse today and got a few more updates. Julia has had a good day. As of about 4pm when I spoke with her, Julia hadn't needed any rescues so far, and she didn't need any extra oxygen. They are starting to go back down on her ventilator settings (which is good). She's finished up one dose of antibiotics and is still working on the second, but it sounds like she's responding well. At this point the plan is to wake her up on Monday, when the full ENT team can be there - they just don't have the staff they want on the weekends, so it's safer to keep her intubated a few more days (the risk is more chance for infection, but she's on the optimal breathing tube now so that helps).

A few people have asked what "rescues" are. Julia gets a steady dose of pain relief and sedation, but if she demonstrates she's in pain in any way (elevated heart rate, high blood pressure, wincing, crying, etc.) they give her an extra dose of the meds to make her comfortable again. Yesterday she needed several rescues, but today she's doing much better.

When the nurse told me that, I immediately realized she said "crying"! I was like... how is my daughter, who is asleep, crying? And she tells me she's NOT asleep all the time. OMG. GUYS. Talk about ripping my heart out. Since they've stopped her paralytic, she has been slowly waking up for longer and longer periods of time. So she is AWAKE and AWARE all by herself! She can't move her head. She's practically restrained to the bed. She can only stare at the ceiling... I could have died when they told me that. She's aware enough when she's awake to 'wince' when they go to suction her lungs because she doesn't like that. But she also opens her mouth for them when they come to brush her teeth! She's also been trying to lift her arms and legs.

The nurse assured me this is what the WANT to have happen. She's on heavy pain meds, mild sedation, and mild anti-anxiety, so their goal is a happy medium between comfort and alertness. They want her to be awake enough so they know that she's still there neurologically.

But OMG. I can't believe none of us have been there today to comfort her. The nurse said she's her only patient all weekend, and she hardly lets her alone in the room - certainly not when she's awake. They have been going in to read books to her, which lowers her heart rate. And they have lullabies playing at night and Paw Patrol on during the day.

She said if Reed and I still have fevers we definitely should not be down there with her. I just checked (like 10 minutes ago) and for the first time in 2 weeks he doesn't have a fever. If it lasts until the morning, he's going down there to stay. He's upset his little girl is awake without him there 😞 We also can't send Charlene down because she's been around germ-ball-Gabriel and his rash. If our fevers come back, I'm going to have to ask Beth Clarke to go down! She's been Julia and Gabriel's babysitter, and is the only other person who would actually be a comfort right now. But I'm going to feel awful asking her go down in Julia's condition. So let's all hope our fevers FINALLY stay gone and we can go be with our little girl to hold her hand and comfort her starting tomorrow.

(The goop on her head in the pic is just Vaseline. Hopefully an open-eye pic tomorrow!)




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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!