Sunday, September 18, 2011

Home today? Maybe....









Raygen has had a few tough days this week but she is such a fighter and such a strong willed little girl. She is doing wonderful today. She is smiling and playing and she is starting to look like her new normal self, without any tape or tube on her face. The g tube is still up in the air as far as "was it worth it?" but I love seeing that beautiful face with no tape on it. They say we might get to come home today if they can get all the follow appointments worked out and the paperwork all done. So it could be tomorrow. For the valve and trake stuff it is all still up in the air. We have tried the speak valve and she does fine, not too much noise because they have put a small hole in it to help her breathe and not send her into a panic. We need to see the otto doc and maybe discuss downsizing her trake so she will have a bigger airway so that will be at our follow up appointment. Who knows, we may get to have the Glenn without the trake or may just have to worry about the trake after, I will leave that up to the doctors and surgeons. I can't believe we will be back in about a month for the glenn. It was so hard to see Raygen in so much pain and discomfort the last few days I am not ready for major open heart surgery. I'm not ready to see her chest cut open and drain tubes and ventilators but I have no choice, Raygen has no choice. As we get to come home I think of baby Emma who is going for her Glenn tomorrow and we are praying for her. I know how hard it is going to be to bring Raygen back for the Glenn so my heart is aching for them. I know we have an amazing God and we also have amazing children. I always think if Raygen can go through all of this and at the end of the day laugh and smile then so can I. Raygen keeps me strong, my husband keeps me sane, Zoie and my family keeps me grounded, and my God fills me with hope. What else do you need?