Hi ! I'm Ashley

Hello everyone.... I'm Ashley. I'm 17 month old. I was born with Hirsprungs Disease. I had 2 surgeries. One to put colostomy and the second was to reverse it. I was coded twice. I was in NICU most of the time. I was intubated twice. I was strong. I managed to come back. I'm home now. I use bipap during sleep. According to my 2 sleep studies, I am retaining CO2. The last sleep study, they changed the mask and placed it including my mouth. They said it helped a lot. But they are thinking and talking about tracheostomy. I'm scared. My family is scared. We've been through a lot. I need help. I need your suggestions. Maybe I need another bipap? or another mask? what's next???? I'm waiting for another sleep study in May.