Hospital Update, Day 15

Things are going better here. Grace had energy to sit up and play her ipad a little. She also enjoyed sitting next to Daddy and Grandma for visits today, and talked with the nurses. It's not a huge difference, but I can start to see Grace again.

Thankfully they don't think she has pneumonia or a fungal infection. Because of her cough, the spots on the CT scan, and her four days of high fevers they were worried. But she hasn't had a fever since last night and she now they think the CT and the cough are part of her flu that she has. What a relief. Fungal infections are serious deals around here. And pneumonia isn't great either. But we can deal with the flu.

She still has tummy pain and we've given her extra morphine because her coughing hurts her. She's still not allowed to eat or drink until her tummy "rests" a few more days. Thankfully she's getting her nutrition through her IV but she still has the desire to eat, which is another sign that she's starting to feel better. Hopefully she can eat soon and I've promised her a fancy-dress-up dinner at home when we get discharged.

Her doctor said that even with the flu, the strep, the sores, and the pain, that overall she was doing very well. And in light of what it could be, that's very true. A year ago I'd be freaking out if we even had two days of that, but now I'm thankful instead. And especially considering the deluge of chemo she received, it is amazing that her body is handling it as well as it is.

I was feeling intimidated that Grace was doing better and that surprised me. As much as I can't wait to get home, I realized that I'm scared of going home. I'm scared of her getting better and then worse again. At least when it's bad you know it's bad, you're not left wondering. I've grown comfortable with the amazing care we've had here. At home it's up to me and Chad.

But then again, that's not really totally true. I think it's universally accepted here at CHLA that parents are as big a player in their children's medical treatment as the nurses and doctors. The nurses and doctors are super attentive, but they trust me when I say "Grace isn't being herself," or "her belly seems swollen," or "I know she pointed to 10 on the pain scale but I can tell it's more like a 2." I've actually been amazed at how much they trust me to help.

And I'm amazed at how quickly they act, and they're like that day and night. But my responsibility also has had me trembling with the weight of how important that job is right now. I'm on high alert. So are the nurses and doctors. We're a good team.

And of course, Grace is the star player on her team. The other night she was struggling to go potty (a side effect of morphine) and I asked her if she wanted to try again later. She told me, "I never give up." And she doesn't. Grace told her nurse tonight that she wants to be a ninja when she grows up. She's a fighter. She takes her shots shaking but without a struggle. She cries, but she still takes her medicines even though they burn her mouth. Even the nurses tell me they're amazed by her. She's amazing. I've never been so proud of her.