Sunday, February 12, 2017

The Plague


Okay, not really.  But it kinda felt like it.  I spent the last week sicker than I remember being in a very long time.  And it looked like a hazmat situation every time I went into Aaron's room:  mask, gloves and robes, after scrubbing and using sanitizer.

Seriously, we really need to keep this guy well!

Except it may not have happened.

We do have some of the garden variety sniffles and coughs going on in the house as well though, and if that's what he's picked up we can probably manage that at home.  If it's what I had, well, we're probably going to find ourselves on "vacation" again.

But in an effort to stay home, we're pulling out all the stops.  I've got a tank that will let me put 15 liters of O2 through every minute.  We've got a shake vest that makes him jiggle like jello trying to move stuff around.  We've got albuterol (all-better-all).  He was on 15 liters for a couple hours this afternoon, but we've managed to scale back to nine on his concentrators again.  He usually gets shake vest treatment twice a day, but I've upped that to every four hours, so six times a day.  He's also getting albuterol every four hours (at least).  I figure if the hospital is going to do the things I can also do at home, let's do it!  It's just if he gets to the point where our ventilator won't support him, then we'll have to go.

But for right now, we're hanging tight.  And I'm really hoping that by being aggressive, we'll manage to make it work.  Here's hoping!

And here's this week's heart posts.  Next month is Trisomy awareness month. (You know, March, third month, trisomy, three chromosomes.)  I'd kinda like to try to do something on Instagram/Facebook each day for March, too, if I can come up with ideas.  So if there's anything you'd like to know, like to see, whatever, PLEASE, let me know.  Shoot me a text or email or respond on here.  I'm pretty good about answering questions, it's just coming up with the questions in the first place.  And as far as Aaron goes, I'm also an open book.  I figure the more people know, the more awareness is spread, the better chance at life kiddos like him have.  So give me suggestions or ask away!!


Day 6. Coping. Man, this is a loaded one. Most of the time we cope fairly well. Preparation and anticipation work well. So does chocolate. ;) Sleep, talking things out and blogging are other ways I process.  














Day 7. Day of Birth. Aaron wasn't breathing at birth. Many hospitals wouldn't have tried to help him, but ours did. We had no idea what to expect, if he would be born alive, and if he was, if he would live for more than a few minutes, so all the kids were there before they started the C-section. We're so grateful for all the help and support we were given.  

 Day 8. Milestones. In the beginning, I refused to think of milestones. He wasn't going to live long enough. Now he's lost teeth, goes to school, smiles and laughs and grows. When we brought him home, the tiny outfit was too big. Now he barely can squeeze into the larger one.



Day 9. Hospital. Aaron has been to a few hospitals, but only one is really equipped to handle him. Also known as "The Hotel on the Hill," his "Vacation Home" and "The Clink," Primary Children's Hospital is his home away from home. I haven't counted recently, but I think we're over 300 days total.


Day 10. Echo/EKG/X-ray. We use a variety of tests to check Aaron's heart. These are the noninvasive ones, or the "no ouchie" ones. The echo checks his heart function, how well it's squeezing and moving the blood around. The EKG checks the electrical side of things. And his X-rays look at his heart size (smaller is better here, his is moderately large), his lungs, and his scoliosis.






Day 11 Heart Mom. It's funny, it actually took me a while to realize I was a heart mom. ♥ But while Trisomy 18 is his primary diagnosis, for Aaron, the biggest threat is the way it's affected his heart, and mine.




Day 12 Heart Dad. Not only does his heart ache, he also has to figure out how to help the other kids with their own broken hearts. See, the heart kiddo isn't the only child in our home, and isn't the only one needing extra time and love. 

Health is not valued 'til sickness comes.
Thomas Fuller

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