I was diagsnosed at 15 days old. I was sent to the hospital in Portland, Oregon. That's where I got my tracheostomy. I had my tracheostomy until I was 16. That's a pretty long time. But luckily I was able to get it out. However, it came with challenges.
I first tried to get it out when I was 9. This was in Portland. I couldn't handle the Bi-pap or the cap on my trach. I remember being so sad. I thought I would never be able to get it out. Then when I was 13 I tried again. I could tolerate it. But my mom told me it's not my time yet. I didn't understand why and I still don't understand why she made me wait longer.
Eventually I went to Seattle and was able to finally get my reach out. The day was November 8th of 2016. I was so happy. I still am.
Now I sleep with my Bi-pap at night and I have mostly a normal life. The only sad thing about getting the trach out is not having my nurses anymore. I still go and vist them though because they all have been my nurses for 8 or more years. That's a long time to be in someone's life.