Side bar, I really like Dr. Jon. She is just so pleasant and her perspective is more about treating the whole child, not just what you're there for. Really a great experience. So great that she's apparently booked up until January 2014 so we were squeezed in for an appointment. That meant our apt was at 9:30 a.m. and we were done about noon. Will was a great "waiter" - we made three trips to the bathroom, played with smurfs, a sand table in the waiting room and just general waiting room entertainment.
The back story is in the link above....
She went over his first sleep study results and his second one that we had in early August. Overall there were three points of concern, not huge concern, but of concern.
1. Heart rate: Will's sleeping/resting heart rate is in the high 90s. I believe the average is high 70s/80s. So not terrible, but not "right" either.
2. Central apnea: This means that his brain is not sending a signal to his body to breath. This happened during the first study, but not at a frequency of significance. During the second study it happened in a more significantly frequent way. Not a ton, but not normal.
3. Obstructive apnea: This means while his brain sent a signal to breathe, his body didn't respond appropriately. Example, if he didn't stop breathing, it was a short shallow breath. This did not happen in the first study at all; in the second study it happened - not a lot, but again, not normal.
He also missed both the early REM sleep periods in both studies. Random, but not of concern at this point as his later REM cycles were normal.
So, all these "little things" can add up or they might just be random little things that were picked up in one night's sleep.
The pulmonologists view is that while his sleep study is not normal, neither is mito (!) and therefore we should consider options. Anecdotally, she said that after putting a child on oxygen at night, about 80% of mito patients report that their child sees a positive - eg. more energy.
We're not opposed to putting Will on oxygen at night, but before we add another medical "thing" in the house I wanted to really vet out why we should / could / would. We had a good conversation about it and what it boiled down to is Will's heart rate. Having an oxygen tank also includes a pulse/ox machine where we can monitor his heart rate, how much oxygen is in his blood and how his body does or does not respond to having oxygen.
So, we're moving forward with the oxygen and the first step will be to keep a diary of sorts to see if we can spot any trends with his heart rate and the addition of oxygen.
This is one of those, "can't hurt, might help" scenarios in my opinion. Okay, well I guess it could hurt if you have his oxygen saturations crazy high and then he is in danger of an oxygen "overdose" but that's why there are monitors etc.
The part I'm most concerned about is the nasal cannula he will have to wear. He is not into that thing at all. While we will be allowed to clip down the actual piece that goes inside his nose, he is still going to be annoyed with it. That's the other reason why we'll keep a diary. If it's not working or helping I have no intention of putting him through all that stress.
And so begins the process... we'll work with a medical home health group to get the proper equipment, get trained and see what happens.
Pre hair cut Mohawk.