11-7-10

Well, we are stuck in limbo, to a certain degree. Quinn is doing so well in so many ways. Her cough is amazing and strong, she is smiling when she is feeling good, and kicking and moving so much more and that is wonderful to see. On the other hand, when she starts coughing, her trach seems to be rubbing against the back of her airway, and if she coughs for very long, it moves the trach back and forth against her airway wall, and causes it to bleed. Watching her struggle to cough for 45 minutes and have the last 10 minutes or so bloody, is frustrating, at the same time, it’s good to see her getting the stuff out on her own, so it’s such a mixed bag. So we are now figuring out if we need to do more of a custom trach that will not rub against her wall, or see if once things heal more, we won’t have this issue. It sounds like custom trachs are a pretty usual thing. So I’m saying some prayers that all the folks here can figure out what is best. After the bleeding, we are not sure if we are going home Monday or not, so currently we are in limbo. Over all Quinn looks great, and when she is not coughing, she is just wonderful, and we could party! However we still have some questions on what needs to happen before we go home. We are also going to do a swallow study before we go home, so we can feel comfortable feeding her by mouth, just a bit here and there for now. So we will see how that goes. I’m still more then grateful for tackling this surgery, it’s just hard to see, 8 days after surgery a smallish complication. It sounds like there are a few different things we can do to make this work, so we are just waiting to figure out what to do to fix this issue.