Sunday, May 22, 2016

A Rough Week

It's been kinda a rough week around here.

We did manage to come home from the hospital on Tuesday, and a sweet friend loaned us a "shake vest" while we try to get insurance coverage for one of our own.  This is a device that vibrates and shakes loose junk inside the lungs.  And also starts about $7,000.  Yikes.  He's been using it twice a day and we're starting to see "stuff" moving.

Being "bagged" while at an
end-of-year banquet.  Yep, that's
how our week went. 
Wednesday he returned to school and came home with a big plug.  The school bus did it's own version of shake therapy and shook a nasty loose just as they arrived.  So we changed his trach emergently, again.

Since then, he's had two MORE trach changes, each with thickened mucus and he's also been quite unstable on his oxygen needs.  Anywhere from two liters to 10 and not maintaining so he's needed to be bagged.  Like I said, it's been rough.

But then there's also the "stuff" going on in my own head, between me, myself and I.  Yeah, he gave us a great blood gas after six hours off the vent, but he's also been getting a lot of plugs.  And the consensus seems to be that's what caused last Saturday's emergency, plugs down too low to suction out.  Plugs are a real threat to trach kids and we nearly lost him last week because of them.  We tried increasing his fluids to see if that would thin the secretions out, but he started retaining quite a bit.  And "wet" lungs are hard to breathe through, too.

Hanging out at his brother's concert.

Plus we've now entered that magic six-week bubble where he simply cannot get sick if he's going to have the surgery he needs.  So I've made the decision that he can't come off the ventilator until at least after he's recovered from his surgery.  That may not seem like a big deal, but inside my mama's heart, it is.

No one likes to think their child can't do something.  We all have dreams for our kids.  For most of us, the idea that they might breathe on their own doesn't even register anywhere on the radar.  But for me, it is (was?) a big one.  And also possibly, someday down the road, the ticket to fixing his heart.  Now that dream is on hold, maybe forever.

Then yesterday a friend of mine didn't wake up.  At least not in this life.  She's a sweet lady, probably ten years younger than me, and a fellow heart mom.  I think I read the post five or six times.  It's an ugly but sad truth that we become somewhat used to medically compromised kids passing away.  But medical mamas?  We're supposed to be invincible. I guess not.

video
Having fun with his voice while getting his 
shake vest treatment. 

Like I said, it's been rough.

I went to church today, hoping, praying, needing to find some comfort, and honestly, afraid and doubting that I really would.  But I did.  And I'm so grateful.  One young man, getting ready to leave his family for two years to teach the Gospel in Argentina, referred to our Savior's time shortly before the Atonement.  He knew what was coming, and He struggled with it.  He dealt with anticipatory grief.  He knew it, and because He did, He knows what I deal with.  As I study Him, learn more of Him, I can call on Him for strength.  And the Atonement not only covers my sins and mistakes, it also enables or strengthens me when I hurt, when I'm scared, when I feel lost.

So while it's not easy, while I don't have all the answers, or even very many of them, I know Who does.  And with His love and grace, I'll make it through.

Peace I leave with you, my peace I give unto you, not as the world gives, give I unto you.  
Let not your heart be troubled, neither let it be afraid.
John 14:27

1 comment:

  1. Thanks!!! I so needed to read this. It was so hard to hear about Kelly we just saw her a few weeks ago. She was ok. I dont think it will ever get easy. Julye.

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