We are Home!

Everything went as planned yesterday, and Harlie is home safe and sound. I was expecting an immediate attitude change, but have yet to see it. She is still very mad. And refuses to communicate in any way with me. Tom says she's mad at him too, but I definitely feel the brunt of it. I will do what I always do and wish the minutes/days/weeks away until she is herself again and all is well.

I know that she's not just mad. She's uncomfortable. Those incisions under her jaw look so painful. She's much more aware of what's going on this time around. I mean, she is three after all. She knows she can't open her mouth and I'm sure that's awful for her. And she doesn't understand why this happened. I wish things could be different. I wish she could hear just fine so I could have explained some of this to her.

Well, Cooper was very happy to see us. Of course he didn't seem to notice a change in Harlie. She was sitting on the couch watching TV and he kept on trying to put her feet in his mouth. I have no idea what that was all about. He also wanted to play with her oxygen tubing, pulse ox machine and feeding pump. And she's pretty protective of her "stuff" so that was annoying her. But she did reach out at one point and rub the top of his head. I suppose that was her way of saying hello.

Murphy got home from school shortly after we got home. He said that she doesn't look like Harlie. And while we all think she looks pretty good, all things considered, all he knows is that she doesn't look like herself. And that is certainly true. He said he was scared, and that wasn't surprising to hear. We just told him that it's okay to be scared right now, but that she is still just Harlie and soon she will feel like playing again, and then eventually, she will look like herself again.

Brandy came over and sat with her for a few hours. I think it was good for Harlie to see some other people for a change. Cooper was also so excited to see Brandy again, too! Sometimes I think we are one big weird family. But I am so very thankful that our nurses are like family. I think it makes our weird life a little more tolerable for my kids (and for us).

So, Brandy and I gave Harlie her first real bath in a week. While she didn't look like she enjoyed it, I know she HAD to have felt so much better. We washed her hair. Brandy tackled her hair for me while I searched for the detangler. I never found it and when I went back to the bathroom, it was all combed out already. Harlie didn't seem to mind. But, I will say that she lets us comb it and put it up in all kinds of ways, with no complaint, so I wasn't that surprised. Now what we are going to do with it today, I cannot say. We'll just have to see how it looks when she wakes up.

This is kinda gross, but we had to wash her hair twice. So much dried blood came out of it that it turned the tub water completely pink/red. Ew! So, we had to give her new water and do it all over again. Her head incision looks great. They didn't shave her head down to her scalp (I'm guessing that is to reduce the itching of the new hair growing through the incision. They just clipped it really short. So, it is kinda hard to put Bacitracin on it, but I think it will be better in the long run.

The trach tie change went pretty well. The incisions under her jaw are pretty raw still. But she let me put some peroxide on them, and then Bacitracin (which I am supposed to do several times per day for several more days) without complaint. She really is a tough cookie. It amazes me what this girl can handle - with NO pain medication. And NO tears. CRAZY!

Well, I think so far, craniofacial surgery is the worst. On all of us. When nurses are taking care of your child and they ask you to see a picture so they can see what she looks like, well that's just weird for a mom. Tom went and printed out an 8 x 10 photo of her to put at her bedside so people could see the real her.





What a difference.

Well, everyone's up now, so I gotta go. More later!

Thanks,
Christy