Friday, July 12, 2013

Cooking the Frog

There's a story, saying, whatever about how you cook a frog.  If you throw him in hot water, he'll jump right back out.  But if you put him in cold water and gradually turn up the heat, he'll be cooked before he realizes there's a problem.  I'm afraid we might have been cooking the frog.

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.

We'll also be changing to a new ventilator on Monday.  I'm hoping that it will be easier for him.  The Trilogy has some newer technology and also involves fewer connections.  Aaron and I will check into the hospital on Monday so they can work out the settings and be home by Tuesday afternoon with the new vent.  In addition to working better for him, the new vent is about half the weight of the old one, good news for my shoulder.

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!

Hope is faith holding out its hand in the dark.  ~George Iles


  1. Well, I hope all of the steps you're taking do the trip for Aaron. He sure is sweet. The pic of his above is absolutely adorable. Keeping good thoughts for all of you.

  2. That pic is fantastic! It was so great seeing you, and thanks for the nursing advice. I am going to use your suggestions. I hope he does great on the trilogy. The Respiratory Director at South Davis said that his kids ds amazing with the switch- some of them telling them that it was more comfortable to breathe on it. I hope that's the case for you guys too. Keep me updated!

  3. You know I'm always thinking about you and your sweet Aaron, Rebekah. Prayers for success with these changes.