Possible Discharge?!?!?

Well, we've had a few busy days at the hospital. I have been really worried about getting kicked out of the PICU and transferred to the floor. Everyone knows that Harlie doesn't really need intensive care anymore. She's quite easy to take care of, actually (compared to a month ago, anyway).

The hardest thing about my day now is making her do physical therapy. It is one of the MOST difficult things I have to do as her mother. They laugh at me because, as her mother, I have to do a lot of things you wouldn't normally do, and I'm really fine with those things. But, making her cry - well, that's a whole different ball game! Personally, I think the sweet babe has been through ENOUGH! But I know that PT is good for her and she needs it. (She is 7 months old but seems more like a 3-4 month old.) This is tough love for me, let me tell you!

Anyway, back to the point... so dreading the floor and trying my best to avoid it - I asked her cardiologist one more time about taking her home WITH the chest tube. He said he has never seen it done, but he would be fine with me doing it if I can make it happen. Evidently they have a problem with the home health care wanting to accept responsiblity for chest tube care. There are some dangers and risks - but I think they are avoidable by taking extra care and being smart. Two things I've already taken care of. haha

So, the second he walked out of our room, I called our home health care company. They said they are fine with it as long as her nurses are fine with it. So, I called our nurses (Dawn and Brandy) and, of course, they are fine with it. So, we are ALL fine with it. So, I told him that, and he called a meeting of all her caregivers at the hospital to discuss it in more detail. So far, none of them have seen this happen (a child go home with a chest tube). But they said that if anyone can do it - it's ME! Isn't that great?! So the discharge nurse called my equipment company and they are working on getting the necessary equipment. The chest tube requires a constant suction - so I'm not sure how they do this at home. I fully expected to hear that it doesn't exist - so I was very glad to hear that they are working on that. So, the goal is to get the equipment to the hospital sometime this week. Hook it up and watch and make sure it works okay for 24 to 48 hours. Get me and our nurses trained on it. And then, HOME!!!

I cannot tell you how incredibly happy I will be to bring her home. I know that we won't be able to do much once she's home since she'll be on continuous feeds 24/7 and the chest tube is a very short leash. And there will be other kinks. Like if I have to take her back if the tube gets clogged. But, who cares! I just think we will all be so much happier and that has to make a difference in her healing. At first, the discharge nurse said that they were going to try to get her home by Mother's Day. How thoughtful are they? But the equipment company has to get the equipment from somewhere else and that's going to take a few days. But, I've been around long enough to know to believe it when I see it. So, I wasn't disappointed or surprised when she said that wasn't going to happen. So, that's the scoop. Exciting stuff, huh?

Well, thank you for everything. Please keep your fingers crossed and pray that everything works out for us next week. Thank you!!!
-Christy