Exciting!!

Beginning of our 5 (8?) minutes

We've taken an exciting step!  Last April, his docs approved of me trying to wean him off the vent.  I've felt for a while now that perhaps his problem wasn't so much ventilation as oxygenation.  So we thought we'd try it, up to five minutes a day at first.  BUT I had no way to deliver the oxygen without the ventilator.  We tried it, but only made it about two minutes at a time.  And he got sick, really sick, shortly thereafter.  Almost two weeks in the PICU sick.  That kind of nixed the plan for a while.

Once he got better, and it took another good month after we came home to get back to normal, I didn't want to rock the boat and chance missing out on our vacation to Arizona.  So I just put it all on the back burner for a while.

Two minutes in.  The 93 is his oxygen saturation
rate and the 115 is his heart rate.  The red/green
line on the left side mean it's not the most reliable
wave form, but that's because he was wiggling
so much!!

But today, today I finally called a friend whose son uses the vent at night, but is just on oxygen (I know, "just on oxygen" sounds really weird, oh well) during the day.  She has a nifty device that lets me put oxygen in through his trach without the ventilator.  So we picked one up and brought it home.

How did it go?  Amazing!!!  I was only going to try (up to) five minutes and see how he did.  Actually, by the time everything was said and done, it was probably eight minutes!  And he didn't even really seem to notice much of a difference.

Oh, there were some small differences.  His oxygen levels bounced around a little bit more, but they were quick dips down and then right back up.  His heart rate was elevated, but only by about 5-10 beats per minute, and he was working a little harder to breathe.  But imagine if you've been sitting for a long time (not an hour, like, a year) and then all of a sudden decided to try to run up and down (or walk even!) stairs for several minutes.  Your heart rate and breathing would increase, too.  And I doubt you'd be smiling like he was.

Eight minutes in, right before I switched him back..

So all in all, it looks like we might make some progress here.  I would LOVE to get off the vent for a while each day.  And it would do great things for his lungs and his pulmonary hypertension to not have that artificial ventilation.  It will be a long, slow process, but progress is being made.  And like I realized last year when I was trying to take him from continuous feeds to a 30 minutes every 3 hours schedule, it doesn't really matter if it takes a while.  We'll get there eventually.  And maybe, maybe that light at the end of the tunnel is the sun, and not an oncoming train.

End of the 8 minutes, right before
he went back on the vent.
Still smiling!

This video is about a minute long from the middle of the trial.  Love my bug!!