OWEN’S NEW SUPERHERO MASK

One of our recent trips this past week to the doctor has included getting Owen’s breathing issues checked out. He’s always been a heavy breather. Always. I remember when he was a newborn, I had to take him to get his hearing checked since he didn’t pass the hospital hearing test. We finally got him asleep, as he needed to be for the test, and they still were unable to do it because he was ‘breathing too loud…’ Um, what?! Sorry that’s just how he was, I couldn’t do anything about that. He has passed all of his hearing tests since then, but 8 years later, here we are.

So, through all of the different types of tests we’ve been doing, one of them was focused on more when I brought it up and then his allergist helped to follow through and started looking into his breathing. Owen has very restless sleep (which is also common with MPS) but I wanted to make him as comfortable as we could so I wanted to look a little deeper. He had a sleep study done a few months back that showed he had moderate to severe sleep apnea for a child. He moves about every 10 minutes or so (as we are able to catch on his camera here at home) and during the study, it showed that he stops breathing for more than 10 times in the night for about 8-10 seconds each time. (Um, yikes.) The doc said with him being monitored, they could measure things that the eye can’t see. Things such as some of the moments that he may look like he’s breathing but nothing is actually coming out for those 8-10 seconds, his airway is about closed. His tonsils were checked out after his sleep study and were not even close to being enlarged, so there was no surgery needed there. We found out his airway is a tad smaller than normal, which makes him breathe heavier through both his nose and mouth to get the extra air in. If I had to describe it to you, at times, he sounds like Darth Vader from Star Wars, ha. Poor kiddo. He would sound like this just laying on your lap watching a movie, and without being able to see his face clearly, you would think he fell asleep. That’s how deep and steady sounding his breathing is.

So, we signed up for another slumber party (sleep study), got all checked in and settled for the night before the fun started. This time the focus was on getting his mask fitted and pressure measured.

We got our jammies on, read a book or two that we brought from home and waited for the nurse to come in to start hooking him up. She was the sweetest lady and probably one of our favorite nurses that we’ve ever had. Mine specifically, because she had the patience of a SAINT that night and I need more people like her in both of our lives and every day routines, ha! If anyone knows Miss Kathy, please tell her THANK YOU again from me and give her a hug. She did an amazing job with my boy. Taking the time and going slow in between to get him used to his sensory issues was what O needed, especially when he isn’t able to understand what’s going on. She caught on quickly, brought in all of his favorite stickers and knew just how to talk to him (like… she talked to him like I do and used the same key words. It was magical for me, ha.)

And want to know how I knew that she was the perfect fit for our night before she even did anything or had to speak? Without even thinking or asking questions, she brought in two masks with her. One for Owen and one for his friend, George, so they could wear them together.
Heart. Melted.

The part he doesn’t do well with is having to put on the electrodes, stickers and wires on his head and body for the EEG and other monitoring. It usually takes quite a bit of time and whoever else on that floor has fallen asleep for their sleep study, at this point, is now awake.

But, a little at a time and very slowly in between stickers being added who knows where, we finally got them all on. This wasn’t our first sleep study, after all, Owen kind of already knows what to expect a little. But we just kept reminding him as we went through it.

By the time he was ready for bed, both Owen and George were covered in Moana and other Disney character stickers all over their body, most of which I knew was going to end up on me somewhere by the morning, haha. Myself and Miss Kathy had a few on us as well.

During the first sleep study I wanted to sleep in the cot that they had to offer so that he could have full range of the bed, just as he would at home, for them to be able to see how he slept. This time, since we were just getting used to the mask, I chose to sleep with him. The night went smoothly for him, but rougher for me. I’m a light sleeper, so any kind of movement, I was awake. He twitched a few times and moved his head from one side to another as far as movement goes, but other than that, he slept hard and well through the night! He woke up in the same position that he fell asleep in and was bright and cheery when Miss Kathy woke him up.

He was excited to show everyone how him and George had matching masks and of course more than happy to give everyone a hug goodbye.

This new chapter may just be a game changer for us, you guys!

He went to his dad’s the day after our sleep study so we kept in touch through his weekend on how he did. And after it being almost a week home now, we are excited to say that he is sleeping through the night, barely moving and waking up so happy while still seeming so well rested!

The cpap machine is quiet and was measured to the pressure he personally needs through our sleep over at the hospital, so there is nothing that I need to change or weird buttons to push. It’s so simple to use. There is a power button that he thinks is cool to push when it’s time and a smaller one that we push right away after turning it on, which starts it on a lower pressure and is on a 20 minute timer, to help gradually push the air out to the pressure needed instead of just allowing it to come at him full force. It came with a nice bag and is easy to pack away for travel and put together quickly. It also has an online recording device that goes right to the hospital, which monitors if there is any kind of air leak that shouldn’t be happening while in use or if there seems to be anything abnormal through the nights. They will alert us over time as needed to keep track of everything and it’s so very helpful.

Purple is also our awareness color for MPS, so I was secretly a little happy inside to be surprised with a hint of that on his headpiece for this part of our journey. :)

I know most of you have seen these, or maybe we all make fun of them when giggling about Grandpa having to use it, but I’m posting all of our experiences here to hopefully help point a family in this direction if needed, or just share what has worked for us during all of our journey. I know if I would have read a post like this a long time ago, than it may not have taken us so long to get here. I hope so much that posts like these help someone!

If your babe is in the same boat as we are, I would recommend the cpap! Removing of the tonsils would be another option and help too, but maybe theirs, just like Owen’s, aren’t enlarged enough for surgery. If this is going to help my babe be more comfortable than I’m all for it!

Owen, you’re quite the superhero and are rocking at having to adapt to all of these new things, my boy. And now when we say ‘goodnight, sleep tight…’ it’s comforting to know that you truly are getting the rest you need.

“Sister Pais” + “Brother B” got to try it on and are learning about everything right alongside you. They love you very much and are constantly here and happy to help you with whatever you need.

We are so proud of you and we all LOVE your new mask! xx