Sleep Study

With ROHHAD Syndrome you are required to do a sleep study to monitor the gas exchange when breathing which gives the doctors a starting point when noting if the breathing is getting worse. Some of Haven's friends, Josh and Mason, are already on ventilators to assist them with breathing. Haven's friend Sophia has had her tonsils and adenoids removed to help her with breathing.

This was Haven's 3rd sleep study in a year. She was last diagnosed with Mild Obstructive Sleep Apnea, however, her sleeping has gotten crazier. We are extremely proud of Haven on this sleep study. She did extremely well and we couldn't have asked for anything more!

By 9:30pm Haven was wired up and ready to try to sleep. Usually it is very difficult for her to fall asleep and we always tell them the results are not true to her sleep pattern....this test was exactly what we have been waiting for. Haven handles getting wired up pretty well but she really doesn't like the stickers on her face and the tubes up her nose.

Only one parent can stay the night with the child so Kris usually stays because I'm better at doing the driving. It's about 1 1/2 hours away at Mt. Washington Pediatric Hospital. So I got home around 11pm and tried to sleep. I finally fell asleep around 3:15am only to have to get up at 4am to go back to the hospital and pick them up.

When I arrived Haven was waking up and the tech was telling me all about their crazy night! He said he has NEVER had a child like Haven. All the techs were watching her on video and just amazed at Haven. Kris was extremely excited about this study. She did exactly what she does at home. She was screaming and sitting up and arms and hands were flailing. The tech told me he has never heard a child reprimand anyone like she did in her sleep. Kris said there was quite a bit of snorning and a few areas of small choking and going back to normal.

We are very proud of Haven as this is the best sleep study she can give. We were starting to feel like everyone was thinking we're just crazy. She never sleeps the way she does at home and we keep telling them that she's crazy in her sleep. We used to have to leash her to the bed so she wouldn't run through the house.

We won't know any results until next week most likely. As soon as I have anything I will update you all with the info. Thank you to everyone wishing Haven a good night sleep....she got an A+ and got to do a little shopping for being so great.

This was at 5:30am after a wild night partying in her sleep!