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Grayson – Born September 2010

My son was born with PRS in Sept of 2010. We were told he was at least an 7 to 8 lb baby. I went in to have an ultra sound and a stress test… I had absolutely no fluid left and had to have an emergency C-section.

When we seen our bundle of joy, he was missing his fingers on his right hand, his jaw was recessed, and he was blue around the mouth. The doctors all said it was “sticky lungs” because boys have a higher tendency to get that when they are born via C-section. Needless to say after a few hrs of trying to get him to eat, he was turning more blue. They sent him to ICU in another hospital. I only got to see my baby for about 45 minutes after he was born.

I was discharged on Saturday morning after I demanded to be so I could spend time with my baby boy. When we arrived at the hospital we were told he had cleft palate. The hospital I delivered him at, NEVER checked his mouth.. I always thought that it was routine that they did this for that simple reason. He stayed in ICU for another week. It was so stressful. So painful and very hard to be with him 24/7 considering we had other children in the home. The doctors did a full evaluation of Grayson. They were concerned about his jaw being recessed, but not to much. Said he may grow out of it. All his tests and scans came back perfect.

About a week of being home, the healthcare nurse that came out to check on him weekly noticed that he wasn’t breathing normal. His chest would cave in, he would freak out on his back. After she had consulted with a nurse at U of M hospital, they made a diagnosis of PRS. I researched online and some images just scared me to death. We go into our pediatrician right away. We were admitted back into the hospital. Grayson was suppose to have a scope done, but the hospital refused because he was so little. The nurses yelled at me because I laid him on his tummy. Well, come to find out they didn’t know anything about PRS. I read that if a child has this they can only lay on their tummy.

After spending 24 long hrs in a hospital that knew nothing about PRS and was doing nothing to help us, we demanded to be transferred to Detroit Childrens Hospital. I will never forget that day. I was talking with my mom on the phone holding my little boy when the flight crew came to take him. I cried. I thought I would lose my little guy. But the crew assured me that he would be in great care. And that he was. They called us the moment they landed at the hospital and kept us up to date on every single thing until we got there. When we got there he was in his sleep study.

We got the results. He stopped breathing 94 times in ONE HOUR! Thankfully he was tongue tied so that basically saved his life. We met with the surgeon and he was having surgery first thing in the morning.

The surgery went extremely well. Besides my little guy deciding to extubate himself. But all is good.