Snapshot on Today

This was about the third time he managed to fling
his lion over the side of his bed.  Then he lays
there, looking at it, until someone rescues him.
I think he's got us well trained.

Today was a pretty typical day as far as life with Aaron goes.

This morning when I took report from the nurse she reported that he'd had a good night, slept really well.  When he woke up, I found he had a pretty boogery nose though.  Gotta love it, right?  I mean, I always swore I wouldn't have snot-nosed kids.  And I didn't!  Until I had kids that is.

But when I got home from running carpool his school nurse said that he'd had some more, and there was some color.  Just like that, we went on snot watch.  You know, there's storm watches when the conditions are ripe for issues, and storm warnings when it's actually occurring.  We were on snot watch.

Then this afternoon, I had a follow-up call with our trach whisperer at the hospital.  We've been having to use his secondary settings, the rescue settings, almost daily because of struggles.  So I talked with her last week about switching to them permanently, but with some modifications to help him breathe a little more comfortably.  This past week has been good from a breathing standpoint but I've consistently had to use more oxygen.

See, breathing actually has two components: ventilation and oxygenation.  Ventilation, or breathing has to do with gasses in and gasses out.  Oxygenation is about oxygen exchange with the cells, that oh-so-important gas our cells need.

I was beginning to wonder why it seemed that I had to choose which one was going to work well, oxygenation or ventilation.  I mean, seriously, BOTH are necessary.  It didn't seem fair.

She suggested that it actually might be the different methods of support, and said she'd do some research into it.  AND she also thought it would be good if I sent a shout-out to mamas in the special needs world to see what others had experienced.

You know, my special needs family came through for me.  I mean, I was looking for some fairly specific parameters.  I needed the same ventilator, oxygen dependent, and experience in switching modes of ventilation.

BINGO!  There is a wealth of knowledge these mamas have.  And yep, it's because the vent is working differently.  I can deal with burning more oxygen, as long as it doesn't mean he's struggling more.

We have a international medical conference coming up this summer, right here in Salt Lake.  I'm on the local SOFT board and we're raising money to attend.  Can I tell you how excited I am to meet other Trisomy parents in person??  This is really a once-in-a-lifetime event for us, at least for Aaron.

See, you can't fly with oxygen tanks.  Yes, you can use a portable oxygen concentrator (POC) on an airplane, but that won't work with a ventilator.  Vents need more flow than a POC can deliver.  Which means that any location not within driving distance is simply not an option.  And having him stable enough to even drive a distance is hard, too.

But this time, it's in my very own backyard, so to speak.  And we're going to be there, by hook or by crook.  'Cause having support like I got today, knowing that these other people really "get it," they've been through the talks about end of life, the heartache, the joys and the fears, you just can't put a price on that.

And we need each other.  We really do.

And that "snot watch?"  Fortunately, it's expired.  He's looking good.

It is not so much our friends’ help that helps us, 

as the confidence of their help. ~Epicurus