Friday, March 16, 2018

Doing Better!

We seem to have finally turned the corner.

They tested him for MRSA, which (thankfully) came back negative.  That meant we could take off his Vancomycin, you know, the stuff he was reacting to.  So that’s gone.  The nasties he’s been growing out are sensitive to his inhaled antibiotics that we use, so we have a plan there, too.  Right now, he’s still on his other IV antibiotics, but we’re transitioning over to his inhaled ones.  The good news is that we’re already set up for them at home.  We’ll just start his next cycle a week early.

Last night he finally got to where we could try to use a trilogy ventilator instead of the big Drager.  He wasn’t quite well enough to use the home version, so they put him on the ICU one, but right now, as I’m typing, the respiratory therapist is putting together the home one, and all signs point to it working well.

He did stay up ALLLL day yesterday, and then continued to party until 4 am.  I didn’t get much sleep either.  So my guess is he’ll sleep most of today.
Home vent!  (and tired little boy)

Our goal is home tomorrow, and it might actually happen!!

In other news, Sunday is March 18, Trisomy 18 day.  Please wear blue for T18.  Help us spread awareness.  When you first get that diagnosis, you feel so alone, you’ve never heard of it, no one knows anything.  In fact, even today, if someone knows what it is, I ask why they know.  And a family member, or a close friend lost a child to T18, but that’s the only thing they know.  A carpet cleaner came to do Aaron’s room a few weeks ago, and he knew about it.  His best friend has a sister with it.  And when he gave me their name, I knew her, too.  A family in Arizona who is an intergal part of our network.

But let others know about it.  The diagnosis isn’t really that rare.  And with increasing education among the public and medical professionals, the survival rate for our little ones is increasing.  They are such a blessing in our lives.

Yesterday, a little boy, almost 12 years old passed away.  My heart is broken, shattered for his mother.  She was one who reached out to me in our early days, sent me pictures of her precious child to encourage me.  I’m having a hard time processing this.  But in her words:
My heart is sad with the physical loss, but more feeling the light and joy that he brought to my life. He was a gift. He inspired me with his tenacity. Lance truly lived every day to the fullest. His life is not to be pitied or remembered as a tragedy, but to acknowledge that his life showed me that you sometimes should take chances and cherish everything that you are given ❤️
Our children, our gifts, the teachers of our souls.

The first step towards change is awareness.  The second step is acceptance.
Nathaniel Branden

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