Late night update for Day 4

So, there have been some new developments. Harlie's secretions are now thin and clear/white, but they are so plentiful! We have been suctioning all day. And her nurse has been doing some chest PT.

A doc from anesthesia came by to talk to me about tomorrow's trip to the OR. Tom wasn't here because he was doing our laundry. My life is so much better when he is here to help me!

Anyway, she did not like the way Harlie looked at all. And while she was here Harlie asked to go potty. So I went and got our nurse who helped me get her there. While sitting on the potty, Harlie did look pretty bad. And blue in the face. Of course it's hard to tell with some bruising already there.

When we got her back in bed and hooked her up to the pulse ox, her sats we're 68!!!! And you could just see how uncomfortable she was. She's still on some oxygen, so when she came off that she desatted immediately and needed the oxygen to come back up. And that's never a good sign. The doc listened to her lungs and said she sounded coarse and was wheezing. She said that she is not well enough to go into the OR tomorrow. And they ordered chest x-rays.

It took forever to get the x-rays and we are still waiting on them to read them. But it looks like she might have atelectasis (collapsed lung) or the beginnings of pneumonia. I don't know. Either way, it's going to slow down our progress.

I feel so bad for her. She really is miserable. And I think I can see that she just feels sick, that it's not just wound pain anymore. She's been coughing a ton, so there's been fresh bleeding from her mouth and a lot of pressure to her head.

She won't let anyone touch her in any way. Not even me or Tom can hold her hand, brush the hair out of her face or wipe the bloody drool from her mouth. If her gown comes down off her shoulders and I try to put it back up, she blocks me with her hand. She's that protective. While I totally get it, it kills me that she doesn't even trust us - her parents. I'm thankful that the staff here seems very understanding and compassionate about it.

It's now been hours since I started this entry. Apparently she has atelectasis and fluid in or around her lungs (they weren't very clear). So they are giving her Lasix to help her get rid of that extra fluid. Her whole body looks swollen to me. So I'm very hopeful that after some Lasix she'll feel better.

Okay, that's it for today. Tomorrow is a new day. And hopefully it will be a good one. Our spirits are still good - so don't worry about us.

Thanks for checking in!

Much love,

Christy xoxo

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