See, Aaron has been very, very slowly becoming less stable. It's been gradual, the kind of thing where I scratch my head and go, "what are you doing today?" But as I look back four to six weeks, overall, it's become a concern. His heart rate has increased, his respiratory rate (how fast he breathes) has increased. His oxygen needs have increased. He's less tolerating of time off the vent or of lying down all the way. A very minor change in his ventilator sent him into a tailspin. All in all, not good signs.
So this Wednesday's appointment brought it all into sharp focus. He is simply not where he's been for the past two years. We're making changes. I've started a couple of things that are outside the usual medical scope (but with the blessing of his doctors). We've started using coconut oil once a day for his digestive and neurological systems. We also started using an essential oil called Crystal Breath to help with his respiratory system, you know, the system that's struggling right now. A lot of other parents have had good results with similar treatments, and I'm hoping we will too.
The trick here will be to figure out how to hook it to his wheelchair. It's a different shape and well, we'll just have to figure it out. There's a really cool double vent tray out there called the addytray, but with everything else, it's beyond the budget. So we're exploring our options. We'll make it work, we always do.
|After a long day with the doctors, all worn out.
So we're going to work on turning down the heat on the frog. We've decreased his calories to make it easier on his heart, we've added the coconut oil and essential oil. Next week we'll switch ventilators. We saw six doctors and three additional specialists this week. It was a long one. But while we won't ever be swimming in cold water, we're hoping that the pot doesn't get too warm. And who wants a cold bath anyway? In this case, I might!