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Brayden's Central Apnea MommyJustice! 3 kids; Cincinnati, Ohio 1574 posts
14th Aug '12

Brayden has Central Sleep Apnea...... His brain forgets to tell his little body to breathe when he sleeps. At birth his breathing was not all that great so to the nursery he went for about an hour they had him on oxygen and were just watching him. Went went home two days after delivery with a healthy normal baby. (so we thought) I noticed right away his breathing was just not right he sounded horrible and I was so afraid to not watch him as he slept. 10 days after Brayden was born he turned BLUE on me and we rushed him to the Emergency Room at Children's Hospital. They immediately put him in observation for a 24 hour watch. His Oxygen levels went Up n Down all night long. The machines kept beeping and it was horrible. The next morning the Resident on call discharged us with a diagnosis of Normal Newborn learning to breathe! I wanted to knock her out!! I knew that was ridiculous but we went home and I called his doctor for a follow up immediately. 3 days later he was blue again and my heart sank my baby was not normal and healthy and I had to find an answer. His doctor sent us to an ENT for his noisy breathing. He did an invasive scope in the office and said all looked well but he wanted to do a more indepth scope. So December 17th 2010 we went to the hospital for surgery. Brayden was taken back at around 8 am ... I didnt get to see him again until almost noon. He had difficulties with the anesthesia is all I was being told. Finally I was able to go back into recovery. He was diagnosed with Larygngomalacia which explained the noisy breathing but not the reason for why he would quit breathing. He also had reflux (GERD) my daughter and I have this as well though. (Prevacid is what he takes daily for this!) The (GERD) is also affected by a hernia on top of his stomache so the medication helps with this as well! The doctors believe he will fix the hernia on his own though and if not surgery will be needed at a later time. Since he was only a month old at the time we were being admitted for observation over night. At around 3pm in the afternoon my son code blue flat lined on the hospital crib. All I know is I layed down to take a nap since Mr Bray was and I woke up to about 10 doctors and nurses hovering over him and resucitating him!!! (Can you say OMG) The sent us the the ICU immediately and began 1000s of test MRI , Cat Scans, Blood Work, Questions and Questions... after 3 days in ICU the RESIDENT lady let me know all test were normal an she was sending us HOME! I flipped out!!!! There is a second opinion hotline at Childrens and I called it! We were given a new doctor an team ... he immediatly ordered a sleep study to determine Braydens oxygen level during rest. After 72 hours of waiting the results were in ...... CENTRAL SLEEP APNEA! I finally had my answer .. not one I wanted per say but so much better than having NO idea! Brayden was put on oxygen and monitored for a few more days a second sleep study to make sure the levels were correct and then we ventured home! Brayden was on oxygen 24/7 until 5 months of age.... now he is free of oxygen as of 9/19/11 and no longer dependant when he sleeps! He is healthy, happy and soooo amazing! I couldnt imagine my world without him!