Children with Down syndrome have a greater risk for obstructive sleep apnea. Emily is one of those children. According to ndss (national down syndrome society), anatomy is the main reason. Some of the factors include: low muscle tone in the mouth and upper airway, poor coordination of airway movements, narrowed air passages, a larger tongue, and hypertrophy (enlargement) of adenoid and tonsillar tissues.

 

When Emily was 3 years old, she had a sleep study. It concluded that she did indeed have sleep apnea. So we had to meet with the ENT to see what the next steps were. Both her tonsils and adenoids were quite large. Her adenoids blocked 80% of her airway passage. So we decided to have her tonsils and adenoids removed. I was a nervous wreck because anesthesia cause numerous issues in individuals with Down syndrome. She handled the surgery well…recovery not so much. She absolutely refused to drink anything. Not one single sip of anything. No popsicles…no juice…nothing! Can you say stubborn?!?! This meant not only did we spend our one scheduled night in the hospital, we were there two nights. We couldn’t go home until she drank liquids on her own. Finally she did.

Prior to her surgery, many people told me the horror stories from their child’s recovery. I will spare you because they were awful and made me a nervous wreck the entire 3 weeks of recovery. Due to the stories, I wanted to make sure she kept drinking fluids and took her pain medicine. I didn’t want anything to stop her from drinking. Well, Miss Emily did not like the medicine. She did not like that I was forcing fluids on her. So she would fight us to take the medicine. She was 3 so I was able to get her to take it and keep it down. This however has lead to the reason why she refuses all medicine still to this day. If you try to give it to her, she will spit it in your face. We tried to sneak it in her food…nope…and that’s probably the reason why she stopped eating those foods. So I constantly pray she doesn’t get sick because I don’t know what I would do.

 

Fast forward 8 years to our second sleep study which occurred this past November. It was awful. She totally freaked out. She did not like the monitor on her finger nor all the wires especially the one on her neck. It took forever but she did fall asleep for a few hours. Then she woke up saying she had to go the bathroom. I called for help to unplug her. I helped her to the bathroom holding the crazy amount of wires so she wouldn’t get tangled in them. She used the bathroom but when she stood up, she passed out. I actually kept my cool…totally surprised myself. Then she stood up again and passed out again. This time I called for help. As a sat on the bathroom floor holding my 11 year old, I felt terrible for her. The poor girl couldn’t tell me what bothered her so much but from my guess, she does not do well with things pressing on her throat. I knew I couldn’t put her through this anymore. We still have several hours left. I had to tell them we were done. When the technician arrived, she helped me get Em back to the bed. We took the wire off her throat and she instantly sighed in relief. I told the technician we had to leave. I couldn’t put her through this anymore. She took all the wires and glue off of Emily then she starting throwing up. Was it the smell from the rubbing alcohol or the anxiety the test caused her? I don’t know. All I knew was my heart was breaking watching her suffer.

 

A few weeks later, it was confirmed Emily once again has sleep apnea. I am glad we don’t have to go through the study again but what happens now? First we go back to the ENT. I have heard that adenoids and tonsils can grow back. I don’t know if I can put her through that surgery again. I know she will not take any medicine. I know I will not be able to make her drink fluids. She is often more stubborn now than she was back then. Then there is the CPAP. I can’t get her to wear her glasses, how in the world will I get her to wear a CPAP mask to bed? 

I am trying to not run every single possible scenario through my head but this is one of my struggles. I need to have a plan so I am prepared for everything yet I will be prepared for nothing. So I end up super stressed before I even know anything. I am trying very hard to not over think this whole process. Her ENT appointment is on Friday. I keep telling myself that we will find out the next possible steps soon. Stop trying to figure them out before you know any details. Just breathe and look for the good. 

To be continued…