Up to 60% of kids with Down syndrome have a sleep disorder called sleep apnea. When we lived in Alaska Mason was put on a sleep apnea monitor. It was (excuse my language) a PAIN IN THE ASS! Mason had to wear it 24 hours a day It was extremely loud and gave me a heart attack every time it went off.
Obstructive Sleep Apnea in children with Downs is caused by a small upper airway, enlarged adenoids, and tonsils, collapsing throat muscles, large tongues, poor muscle tone.
Mason saw a Ear, Nose, and throat doctor (otolaryngologists) to look at his Adenoids to see if they were enlarged and needed to be removed. That WAS FUN! NOT. I sat in a chair holding Mason in my lap, holding his arms down, while his dad held his head steady with both hands. The doctor took a scope went up Masons nose down to the back of his throat. Mason was scared, uncomfortable and probably in pain. He screamed and screamed. The doctor said his adenoids looked a healthy size. He could see that Mason had a very swollen throat and confirmed Mason had Reflux (which he is medicated for daily)
Masons doctor here in Colorado wanted to follow up with the sleep apnea tests. He however doesn't like the sleep apnea monitor because there can be false alarms. So he had me pick up a cpulse oximeter for a one night study. It was to be wrapped around his little toe while he slept. It kept track of his heart rate and oxygen level.
Today Mason had a check up because he had an ear infection and the doctor wanted to make sure it was healed and didnt need further treatment. I reminded his doctor I got a call saying his oximeter results were faxed to his office. He went out of the room to check on it. He walked in with a stack of papers and I said " Mason did not like that on his toe at all." He looked at his paper, and back up at me and said " The results arent good." Im not real sure what I said after that my mind was rewinding what he just told me over and over and I felt my heart drop to my stomach. He continued to tell me that the oxygen level needs to stay above 90 and Masons oxygen level was never at 90 or above it was well below it.
I cant explain the feeling being told that. Right there in the moment it was hard to swallow, I didn't know what was next. My little 18 lb baby doesn't get the oxygen he needs when he sleeps. I believe that would be scary for any parent to hear. He told me Mason cannot sleep without oxygen and he needs further sleep studies done.
Tonight I was waiting for a guy to come to bring oxygen for Mason. ahhhh! He brought in a machine, tubes, directions, 4 oxygen tanks, and a backpack to carry one in when we leave the house. I asked him if he could hook everything up, explain it to us because clearly this was new to us. He was very nice. He was impressed when we put the tubes in Masons nose it didn't bother him.
So within the next day I am supposed to be getting an appointment for a sleep study also known as a polysomnogram or PSG, is an overnight test that monitors breathing, brainwaves and muscle
movements during sleep using sensors placed on babies legs, body and head.
babies movements and noises will also be recorded by videotape. Doctor said that will be done right away until then Mason needs oxygen every time he is asleep. I will keep you all updated! Prayers are welcomed! e their tongue to relax, blocking their airway at night.
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