Thursday, June 23, 2016

Tests and More Tests

We're still here, still scratching our heads.  Still using a lot of oxygen.

Yesterday we changed his formula back to what he had been on for just over four years and I really hope, I NEED that to be the answer, but it may take time if it is.  Whatever, we'll give it to him.

Not Aaron's airway, but similar.
They also had ENT come by and look in his ears (they're sooo hard to visualize 'cause they're so tiny) and scope his trachea.  Man, I wish I would have got pictures of the scope!  It was beyond cool to see!  But I was too busy geeking out to remember.  Sorry.  You'll have to make due with an internet photo, but really!  They put the little camera down through his trach and into his lungs.  I could see where it branched off into the left and right lung, and also the little bit of tissue they've found that sorta blocks the upper right lobe and everything.  Like I said, it was amazing!

The best part was that it was wide open, clear and clean, with no signs of growths or scarring or anything.  I mean, when you're sticking a vacuum down your kid's throat on a fairly regular basis, you do sometimes wonder if you could be causing issues.

Today pulmonolgy is supposed to stop by and there is talk of a CT scan of the lungs.  It's something we've discussed before, but it's becoming more of a reality.  Has his lung disease progressed?  Is it something that needs to be addressed?  Can we?

And tonight he'll also get a couple of abdominal ultrasounds just to rule out problems with his liver or kidneys.  Yeah, we're trying to cover all the bases.

And we're still hoping it's that he just didn't like his dinner.

The only courage that matters is the kind that 
gets you from one moment to the next. 
~Mignon McLaughlin

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