My son is a 14 year old non-verbal DMD child with autism. I want you to know this before you read my Blog. I believe it will help you understand why i live day by day through my son's (our) horrible disease.
I am not sure if any of you heard of this cough assist device? I write this to you all , not becuase i want to cause you pain but to get you prepared before you actually need such a device. My son almost died this summer at school. He almost choked to death on a mucous plug. I received the phone call one morning. I was not even dressed that early am. I was told Jeffrey had a seizure at school in complete detail. I imediately broke down. My son never had such a thing in his entire life. I was devastated. They described the supposed seizure in detail. Eyes, rolling back into head, shaking, blue. I won't continue with the graphics. After rushing to the school and then escorted to the hospital by ambulance, test after test. NO SEIZURE!
We then learned that our boys, can not bring up the secretions that we normally do all day long. I have to admit. I do live day by day. If i do not , i will break and i know it. Just the time i have spent on this blog and searching all your pictures and stories. I have been in complete hysteric, out loud tears. I am Justifying why i have not been prepared for this event.
My son is autistic, non-verbal. He could not speak or tell us how he was feeling. The last cold he had was a month previous but lasted for a few weeks, and then another proceeded it. It was about a month there after , when the emergency happened. After talking to Jeffrey's Pediatrician , i learned that he believed there was no seizure. After meeting with the Pulminologist . We started him on the cough assist device. We learned that this machine can stop our children from developing pneumonia which typically will lead our children to death or into a hopital. There are some other health risks as a result of pneumonia as well. i wanted all of you, who read this who have children younger then my son. BEAWARE. I also I want you to know, My son enjoys the machine a lot. I do believe he knows it is helping him. Maybe he feels the relief. I am very glad and relieved i now have this machine to help my son with his respirtory issues. If any of you use this machine or have childrent that use it that can tell you what the feel. I really would love to hear from you or them. Remember my son can't tell me. Maybe yours can.
Thank you for taking the time to read my blog.