Sleep should be peaceful, right?

We had a pretty big appointment today for Jake with a sleep specialist and an ENT (ear nose throat) at Children's. The appointment started at 7:45 and we dropped him off at school at 10:30-so a long one. We have never had a dual appointment for him so this way new and all came from his last sleep study in September. I got a call that he was "much better" but still needs to wear the CPAP at night (our biggest challenge EVER). So we went to this recommended appointment and my head is still reeling.

Here's a few things he got done: scoped (a small camera inserted through his nose that looked all the way down to his airway for 2 minutes-longest 2 minutes ever when Jake is kicking and takes 3 people to hold him down), and EKG (many kids with sleep apnea have enlarged hearts due to the extra work required) and a blood draw (to check his iron levels-sometimes can be an issue with kids with sleep apnea).

He obstructed 65 times an hour in October 2015 (before his tonsils were taken out and a spongy thing in the nose-very technical). Sixty-five. Clinically they consider 5-10 episodes and hour severe. Jake had 65. That was never presented to me in that way and I had to pick my jaw up off the floor. Since his tonsils were removed and the spongy thing (plus they fixed his deviated septum) he had 10 episodes per hour in September 2016. Improved is an understatement but he is still clinically severe. We have a few things to work on in the next few months.

1. He will get his palate spread with orthodontics
2. He will start on an iron supplement
3. He is taking flonase and singluar every day
4. Daily nasal rinses with a rinse kit
5. We will try a new CPAP mask (see the picture below!)
6. He will go to a desensitization clinic appointment so we can reintroduce the CPAP in a positive way
7. He will do an under anesthesia "sleep study" to watch him very closely and scope him to see what is obstructing him
8. Cranial facial surgery will be in his future to reconstruct the area under his eye (bones)

It has been A LOT to digest. I am so thankful Bobby was there to hear everything with me. I didn't know what to expect but I feel so confident about our steps going forward. Poor little guy was put through so much today and I hate to see him cry.  He was NOT having anyone come near him at the end so much so that they were literally loading him up with new stuffed animals and toys and stickers. :) He walked into school and turned to me and said, "Bus?" So happy to be able to remind ourselves of what it feels like to appreciate what he loves and to remember on step at a time. He's a happy, happy little boy and for that we can always be thankful.

This is the new CPAP mask we are trying. In the next couple of months we will also try a new machine that could make a difference for pediatric sleep apnea. 

In case anyone is wondering, Jake still cries for his waffles every.single.morning. You better put a hustle on it and have them waiting for him when he comes down. Ha!