Friday, April 4, 2014

Sick, So Sick, Again

Okay, no promises that this will make a lot of sense, or that it will be in English (as opposed to Medicalese) but here's what's going on.  And as much as I don't really want to relive it, I do need to get it down.

Yesterday morning, Aaron had a little bit of a runny nose.  And when I say, "little bit" that's all it was, a tiny bit of clear snot that drained out when we moved him to his wheelchair.  After school, his nurse said he'd had quite a bit more, but it was all still really thin and really clear.

At that point, I was thinking allergies.  In fact, he and I had a little "argument."  I was mentioning to his nurse that I was leaning towards allergies because he was so happy, because last time when he was sick, he wasn't happy at all.  And he started nodding his head, "yes, I was."  And I said, "no, you weren't," and shook my head.  And more emphatically, he nodded, "yes, I was!"  Trust me, he wasn't!

This morning at home.  You can see the
"tools of the trade" in his bed.
There's his albuterol with his spacer, his
peach colored percussor that we use to
do CPT, and his bag mask, when he
decides that he wants extra help with
breathing.  And yeah, he's exhausted.
But as the day wore on, he started having stuff in his trach, and it was colored, yucky green/yellow colors.  It got thicker, he got sadder.  But he was still doing okay.  By 7 p.m., I decided with the direction that he was heading, I was going to try to get in a pre-emptive strike and started giving him albuterol.  That did help open him up more and it also helped release a lot of the junk he had so we could pull it out.

I wasn't sure if we would make it through the night, but hoped we would.  In fact, I was hoping we might even be able to just stay home.  Well, he made it through the night, in part due to his nurse doing CPT (chest physio therapy) almost all night long.  But this morning, I think he decided he'd been nice long enough.  He had let me sleep, but I was awake now anyway.

His chest x-ray from this morning.  Not great,
but not too bad either.  Frankly, it looks like him:
cloudy with a chance of junk.
Just before 7 a.m. he had a pretty bad desat.  Like, down into the 60% oxygen bad desat.  He wasn't moving even with a lot more oxygen, or actually he was, but it was lower, not higher.  That's how he ended up in the 60's.  So I bagged him.  It took several minutes to pull him back up into the 90's.  I kept going a little longer to keep him there, and then put him back on the vent.

I got about three minutes.  Nose dive, again.  So I started bagging again, this time giving him albuterol at the same time.  Andrew wanted to help, and I did need another pair of hands, so he bagged while I suctioned  and gave the albuterol.  Again, it was several minutes, ten to 15, before I could try putting him back on the vent.

This morning in the emergency
department.  He was a bit happier
when he had more support.
The albuterol bought us 30 minutes.  And again, we were bagging.   And I decided it was time to throw in the towel.  It still took a very long time to bring him up.  Now it was closer to 15 to 20 minutes.  In fact, based on the info I was giving them, dispatch sent a cop, too, in case they had to shut down the road for LifeFlight.  I guess they didn't realize I've already told Aaron he's not allowed another one of those.

So we came up here, lights and sirens, bagging him all the way.  We also were pulling a lot of junk out of him.  Once in the emergency room, they were able to get him back on a ventilator, but at significantly increased settings.

Now, he's resting, but he's pretty miserable.  He's tested positive for, wait, guess what . . . rhinovirus.  Yep, his ol' nemesis.  And we probably haven't reached the worst yet.  Fortunately, we've still got a lot of wiggle room in what supports we can get here in the PICU.

Please keep him in prayer.  This is going to be a rough time for him, and probably a longer stay, too.  I had all sorts of plans for spring break, including catching up on sleep.  We were going to get indoor/outdoor carpet put down on the ramp that our wonderful neighbor built.  I was going to recover the rocker that has seen so many, many hours of use since he was born.  I was going to put in raspberry plants, and even find my closet and laundry room.  But apparently Aaron felt like spring break needed a vacation trip.  Unfortunately, he didn't plan his destination as well as I would have liked.

But those things will still be there when we get home, eventually.  When I was a kid, my mom had a poem about babies growing up that hung on the wall.  And while he is my "forever baby," he won't "keep."  So this week, and probably the next and maybe the one after that, I'll focus on him.  And be so grateful that I can.

Oh, and if you want to see the quick, down and dirty updates, I do update his facebook page a little more frequently.  Plus, you won't (always) be subjected to my inner musings and wonderings. Here's the link for it.!/CompatiblewithJoy.Trisomy18.13

The cleaning and scrubbing can wait till tomorrow
But children grow up as I've learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!
I'm rocking my baby and babies don't keep.


  1. I'm so sorry! I wish I could go find your closet for you and install your carpet and recover your rocker! Since my children are home for spring break and nothing NOTHING will get done though, I will pray for you and Aaron. Hugs xoxo

  2. Oh poor Aaron! And you - I know it can be so scary every time they get sick. They can be "OK" and then just nose dive a few hours later. I am praying for Aaron's full and quick recovery!