Sunday, July 15, 2012

New Trach!

Rockin' the new trach!
We've got new trachs!  I've never been excited for a trach change before but these new ones are awesome!  His new trach is a flex-end trach.  Like it's name suggests, it's flexible on the end.

My old trach
The old ones came straight out of the neck and the ballard and circuit attached on to it.  So any tummy time or anything like that, and we had to be careful not to push on it.  It wouldn't really hurt in a damaging sense of the word, but it sure wasn't comfortable.  Imagine laying on something hard pushing into your throat.  Ouch!

The biggest problem with the old trachs is that he's getting more mobile.  He's rolling back and forth and trying to roll over.  Now, this isn't really a problem.  It's fantastic on so many levels!  It means he's getting stronger.  It means he's developing more connections in his brain with purposeful movement.  It even means being healthier, because the more he moves, the better he is at getting oxygen down into those far corners of the lungs and into his blood.  (You know, kinda one of the main challenges he has.)  That's why after surgery, the nurses are always telling you to move around and to cough.  They want to make sure the lungs are opening up all the way.

Anyway, the challenge for him with rolling is the pressure and pull that the circuit (the tubes that carry the oxygen and air from the ventilator to him) put on the trach.  Think about it.  He's got this stoma,  hole, in his neck with an inflexible piece of plastic then attached to a (relatively) heavy circuit.  Yep, he was tearing that stoma.  Now, I don't think it was painful, or at least he didn't act like it was.  But we've had several small tears and a couple of moderate tears over the past couple months.  Not really what we're wanting on so many levels:  risk of infection or increased decannulation (trach coming out accidently) to name two.

So the solution?  A trach with a flexible end.  Now it lays flat on his chest and can move so much more without any stress on his stoma.  Fantastic!

One month after getting my trach.
But the best part in my mind is what it signifies:  he's doing so well and learning and growing.  'Cause see, the reason he wasn't a candidate for this before was because he  wasn't "supposed to live long enough to roll over."  That from a woman I respect incredibly.  One of the (many) reasons I respect her is because she is realistic.  She's hopeful as well, but she knows her stuff and understands the odds.  And back when we trached this little 4.4 kilo (10-ish pounds) four month old, his odds were just way out there.

But due to a wonderful fighting spirit, an incredible medical team (with this woman in the forefront), and many miracles, he is still here, and he is rolling over.  And we're looking towards school and further on down the road.  Yea for Aaron!

"The road to success is always under construction”
Lily Tomlin


  1. That's really awesome! Keep growing and getting stronger, Aaron!

  2. I bet I know who that amazing woman is.....


    Tammy and Parker

    1. Yep, Tammy, I bet you do! I need to give you a call and try to come see you sometime this week. Is there a good time?