Aiden's sleep study and results

Well this was quite an experience. We went into it thinking nothing would be wrong, but we got some results we weren't expecting. First I'll describe the study, then the results.

We went to the sleep center at 7pm and got settled in our room. A nurse came in when I started to give him his last bottle of the night and began putting electrodes all over him. There were about 30 or so from his head to his toe. When he was done eating, he was very sleepy so I put him in the crib and the nurse finished putting the electrodes on - while Aiden screamed horribly. I could tell it was very uncomfortable for him - but not painful. (Although kind of painful for me to watch...) When he finally settled down and fell asleep, I went to bed as well.

Let's just say it was a long night. Aiden usually sleeps great. We have a video monitor at home so we see if and when he wakes up or wrestles around. This doesn't happen very frequently at home. But here, anytime he would move to switch positions, he became aware of the sticky things all over him and fussed and cried. And the nurse had to come in and reattach some of them that shifted or fell off, which just woke him up more and more crying would ensue. Needless to say, he didn't get very much sleep (75% sleep rate to quote the test results) - and I got about 5% :)

When he woke up at his normal time of about 6 am, it was over and we were out of there by 7 am.

Now, the results. The sleep center called me this morning and said the doctor reviewed his results and wanted to speak with me in person...I had a gut feeling something wasn't good about that. I explained that I couldn't come in (didn't have a babysitter) but asked if she could scan and email the report for us to discuss over the phone. They did that and the doctor called - I put Ricky on 3-way calling from work so he could hear as well.

She said that it appeared from his tests that he had something known as central sleep apnea. There are two types - central and obstructive. Central apnea, in a nutshell, is caused from a lack of messaging from the brain to tell Aiden to breath. He may stop breathing for a few seconds, then when his oxygen levels dip down, he kind of startles himself awake enough to take another breath. Obstructive would be caused by anatomy (deviated septum, smaller airways, large adenoids, etc.) She said she was concerned because often times central apnea can indicate pressure on the brain. Obviously, this is bad, and something we've been on the lookout for because of his Apert syndrome. Most Apert kids experience pressure at some point because of the closed suture(s), which only requires surgery if and when it becomes a problem for the growth of the brain.

We were kind of confused because just a week ago his eye doctor said his optic nerve looked great which is a good indicator for any pressure being present. And we've been in communication with the team in Dallas on a regular basis to share photos of his head shape and circumference measurements which Dr. Fearon has said all look normal.

So, after talking with the doctor at the sleep center, we had her get in touch with Dr. Fearon. She suggested doing an additional sleep study while on oxygen to determine if he needed to be on it all the time while he slept. I didn't feel comfortable making that decision without Dr. F's input.

She spoke with him and called back to say he wanted Aiden to get an MRI of his brain. She didn't give us any more details so I called him myself to get more info.

Dr. Fearon seems pretty confident that it is NOT central apnea but rather obstructive apnea. The MRI will give us more info - showing us if there is something called a chiari malformation. The way he explained this was that there is a hole in the back of the head that connects the brain and the lower body where cerebral spinal fluid travels. A malformation would mean the brain was pushing on that hole, blocking the flow of fluid and causing it to build up, thus the pressure. Central apnea is often present when there is a chiari malformation. However, obstructive apnea is not usually related to a chiari malformation - so in Aiden's case, if Dr. Fearon is right, we're hoping that the test results were wrong, the MRI shows no malformation and it is obstructive and not central apnea.

We were able to get the 2nd sleep study scheduled for Dallas during our trip down there on the 9th. This is good news because the sleep center there deals with kids with Apert Syndrome all the time. This one here had never tested anyone with Apert (which might be why Dr. Fearon thinks the results were scored and/or read wrong).

So now, we're waiting to hear back when we can get the MRI done. If the MRI shows chiari malformation, we will still be going down to Dallas as scheduled but will meet with Dr. Sacco (the neurosurgeon) to determine a plan of action. His hand/feet surgeries will most likely be put on hold.

If the MRI shows NO chiari malformation, we will go to Dallas, have the sleep study and based on those results continue with the hand/foot surgeries while also having Aiden's tonsils removed at the same time (if it is determined to be obstructive apnea).

In the meantime, Aiden will be put on a nasal canula while sleeping to increase his oxygen levels.

Did I mention this child is high maintenance??? :)