TrachKids.org

Today I feel overwhelmed. I figure by starting a blog I can get my thoughts and feelings out and have something to look back on. So here it goes...
 
I'm so happy to have found a place to share our story and hear other's stories. It's always nice to know you're not alone in the world. Today I met another lady with a child who has BWS in the tracheostomy.com forums. This is so exciting for me as I'm keen to hear of her experiences. I'm finding a lot of useful information in the forums. With our pending sleep study it's a good place to immerse myself in information and stories from others. I'm mindful that these are other's experiences, we can only really know what will happen by going through it ourselves. The sharing helps though.
 
As far as the study goes I'm feeling so many things. There's nothing worse than venturing into the unknown. I know next week is going to be filled with lots of time spent waiting on test results and being away from my darling husband Grant and beautiful son Sebastian. I've been told that there's a good chance that we won't find the answers to why he stops breathing in his sleep. At this stage, I'm more concerned about the treatment and how it's going to affect Dominic and our lives. I'm guessing medication will be the best case scenario and Bi-PAP or C-PAP may even be on the cards. Being that it's central apnoeas, we could end up having an MRI which means another trip to theatre for a general aneasthetic. You'd think we'd be used to all this by now but no matter how many times we go through discovering a new health issue or having more tests, I always get nervous. The reality of it is, we won't know until we have the sleep study next week. 
 
Sometimes the waiting is the hardest part.