The Hope, The Dream

Sleepy boy, with NO vent circuit!

I've heard it said that a goal not written down is just a wish.  So tonight I wrote out a plan for getting off the ventilator.  Notice in his picture (yeah, the camera woke him up, sorry, kiddo), there's NO VENT CIRCUIT attached.  Yeah, he's just on a "nose" and oxygen tubing.  Huge freedom. 

And look here:  NO lights on the vent.  It's turned off.  This is what we call a sprinting trial.  And it's kind of like a sprint, quickly turning into a marathon.  

Aaron is at 90 minutes, three times a day, off the ventilator!  That's HUGE!  See, there are a lot of reasons he shouldn't ever be able to come off the vent.  For one, the pressures we had to use to keep his lungs open were crazy high.  It's called PEEP and his was a 10.  That was enormous, not really allowing a lot of room for the lungs to relax much.  And like anything that's always stretched to capacity, it means that his lungs lose elasticity over time.  

No lights!  The vent is off.

Also, having a machine breathe for you for almost two years, 24/7, means that your muscles loose tone and strength, not to mention, the body can "forget"how to breathe, or lose the drive to breathe.

From what we have going, it looks like he needs to simply strengthen those muscles again.  Many people, even if they can be off a ventilator while awake, need it when sleeping.  Even asleep, he does well.  His heart rate and breathing rates are slightly higher than normal, but still well within his normal limits.

By the time he gets to his third sprint, it's certainly harder for him.  He needs a little more oxygen, and he has to work a little harder.  Sometimes at the beginning of the week, I'll cut the third sprint off early.  But by the end of the week, he's sailing along again.

So here's our schedule.  I haven't cleared it yet with him or his doctor.  I doubt the doctors will have much to say, except they may want us to do more with it at night.  Right now, I don't have written orders from them, so it all has to be done during the day when I'm around.  His nurses can't change him from the vent without a medical order.

The schedule?? (red is time off the vent)

The bigger challenge will be clearing it with Aaron.  I'm tempted to post it over his crib so that he can see it himself.  But if we can get off the vent, it will be so much better for his lungs and heart.  We've certainly needed the ventilator.  Not breathing isn't a very good option.  But never did I even let myself think that not needing it would ever be a realistic option.  This is really exciting, on so many different levels.  On this schedule, he'll be off the vent for 16 hours a day by Thanksgiving.  What a thing to be thankful for...

Dream no small dreams for they have no power to move the hearts of men.

Johann Wolfgang von Goethe