Wednesday, December 28, 2011


On December 14th, we were able to take Daylon over to the Sleep Center in the afternoon to see if we could get him fit for a mask and take a nap.

We got him set up with a mask, and he fell asleep for an hour with it on. During that hour, they adjusted the airflow to where they needed it to be to keep his airway open. They found that he needed it at 9. So, once we had that figured out we were able to pick up our CPAP machine the morning of the 15th.

He has done really well with it. At one point, we had him on a mask that looked very similar to a fireman's mask. He loved the thought of it, but had trouble keeping it on because it was so bulky.

I talked to his respiratory therapist today. They had looked over his downloads from the last two weeks, and found that he was still having events with the flow set at 9, so they wanted to set his machine to auto. We went ahead and set it up on auto this afternoon, with it set on auto it will start at 9 and automatically adjust to where he needs it. I have been watching it this evening to see where it is and it has been ranging anywhere from 9 to 14.2. This just amazes me considering I know adults who are on 12.

Thursday, December 15, 2011

December 14th Appointment with ENT

We had our appointment with ENT and discussed the surgery to have new tubes placed and also to have his airway evaluated. That surgery is scheduled for January 12th. We will not have a time, until the day before when I call. YAY!!!

Monday, December 5, 2011

Sleep Study Results

All I can say is WOW!! and I am soo glad I followed my "Mommy Instincts" on this.

In 452 minutes of sleep 304 episodes of apnea were scored, 288 were central (meaning there was no effort), 7 were obstructive. Another 158 episodes of obstructive hypopnea were identified. Hypopnea is when there is a 30-90% reduction in airflow. The overall AHI (apnea-hypopnea index) was 52. AHI is used to determine the severity of sleep apnea 5-15 is mild, 15-30 is moderate, and above 30 is severe.

Daylon's oxygen saturation dropped significantly as low as 55% at one point. His oxygen level was below 90% for 20% of the study.

Obstructive Sleep Apnea, Central Sleep Apnea, and Hypoxemia

Have airway reassessed by ENT, and CPAP would also be a possibility.

We are not able to see ENT until December 14th, but saw Dr. T today. He does not feel that ENT is going to find anything that they can fix, so he wants to get Daylon on a CPAP if at all possible. We tried a little bit today, but he wasn't having it, so we will do an overnight CPAP titration study on January 4th.