Well....we are home!

We are HOME! Christy is sleeping, Murphy is watching The Land Before Time (for the 50th time - thanks Elaine....haha) and I am sitting here. Almost seems somewhat normal. Of course normal means something completely different to us. Dawn (our nurse) spent the night and is still here. She is going to help out a bunch this weekend which is nice. I am sure Christy will update this more later. I just wanted to pass the word on to those who read daily.

Tom

It is so funny to read Tom's entry - so short, so calm. Me, on the other hand, is GIDDY with absolute happiness!!! It was really weird to leave WITH her. I had such a mix of emotions - so happy and so sad at the same time. I feel like everyone there really took to her and loved her. And I feel like I made friends and I am sad I won't get to see them on a daily basis anymore.

The other weird thing is that I know in the back of my mind that there is a good chance I will have to take her back in the near future. She has been on room air for 4 days now - the longest ever. I know that if I have to turn the O2 on, that's a sign that the effusion is too much for her to tolerate. Then we'll take her back to MCV and they would tap her and drain it. But, they are thinking I could take her back home again and wait till the next time. But, hopefully none of that will happen.

Until the chest tube site heals, I have to continue to give her sponge baths. I can't wait to give her a regular bath again. She's going to love it. But, last night when I was giving her a sponge bath, she was flapping her arms and smiling the whole time. She seems so happy to be home! Oh, and since she's not on O2, I started letting her wear an HME or artificial nose over the trach (to heat and moisturize her air). The idea is this is what she'll wear when she's awake (so she can have some freedom to roll over and use her arms without the trach collar in her way) and she will go on the trach collar when she's sleeping. I am really excited about that. She would be so free if it weren't for her food.

I can't remember if I mentioned it before, but she's on continuous feeds 24/7 for the next 2 months or so. Once she's completely healed from the chylothorax, after 3 months or so, then she'll be able to go back to a somewhat regular schedule and regular formula.

Well, I am going to go and play house now. I actually have a ton of unpacking and organizing to do. Thanks for all your support and I'll talk to you soon!

Take care!
Christy