Thursday, December 3, 2015

Again, Again, AGAIN!

Quite a bit has happened since I last wrote about our little man.

He had a (relatively) quiet week between discharge and surgery.  Sure, he had a few asthma blips, but those also coincided with weather changes.  No biggie.

On Tuesday, he had surgery, same day surgery.  They went in and cleaned out his ears and replaced the tubes.  The good news is that there wasn't a whole lot of gunk down inside his middle ear.  That gives us hope that this surgery really will take care of the problem.  The bad news is that it bled, a LOT.  In fact, 45 minutes into his 20 minute surgery, I got a call from the OR saying that things were going well from a breathing standpoint, but they were having trouble controlling the bleeding.  It was about another 45 minutes before the surgeon came out to talk to me.  Now our challenge is to keep those new tubes from becoming blocked up with blood.  Fun times, right?

Anyway, recovery in post-op went well.  We went to lunch with the Rainbow Kids team, and headed on home.  But about three-quarters of the way home, he decided he hadn't seen enough of the hospital, we'd shorted him somehow.  He needed more oxygen.  And some more.  And after we got home, even more.

I even tried changing up some of his vent settings at home to see if I could buy him some more wiggle room.  I didn't really notice a difference.  We managed to stay home Tuesday night, and on Wednesday, he was more stable, in that he didn't have drops or need quite as much rescuing.  But he was still on nine liters of the good stuff.  Yeah, not so good.

But about 5 o'clock, we ran out of steam.  I couldn't even keep his sats in the mid 80's.  I tried another round of albuterol, and William bagged him back into the high 90's.  We tried one more time to put him back on the vent and he slipped right back down.  So it was time to give up and call for help.

But our monkey?  He was "helping" Dad bag him and laughing at us.  In the course of our conversation, Dispatch asked about his demeanor, was he talking, crying?  I said, "he's laughing at us."  "Excuse me?"  "Nevermind, he's fine."

So we're back, just a little more than 24 hours after we left.  His initial x-ray was kinda nasty and his labs weren't good either.  There was also a strange patch that was concerning so they repeated it again this morning.  Good news for us, it looked much better!

So our initial diagnosis was pneumonia, again.  But today we're not as sure.  It may still just be related to the anesthesia combined with his recent illness.  Regardless, he needs to come down on his oxygen so we can get out of here.

'Cause frankly, while I really am grateful for this place and all the help we get here, it's getting just a wee bit old to be here so much.

All I can say is this kid has been taking his "vacations" much more often than anyone else I know.

Oh, and how do you travel with a kiddo in a crazy huge hospital bed? You transfer him to a wagon.  But it still takes a nurse, a tech and a respiratory therapist to get him where he needs to go.  This kid doesn't travel light.

A vacation is what you take when you can no longer take what you've been taking. 
~Earl Wilson


  1. We like the wagon, but hope Aaron doesn't enjoy it too much or he may decide to have an extended vacation. We are all praying it's a quick trip. We love you!

  2. Lots of love to you and Aaron. The wagon looks like a good idea! Get better quickly Aaron, you need to be at home with your mummy and daddy, getting ready for Christmas. <3

  3. Oh Aaron. Your mama's posts about you make me laugh AND cry. You stop monkeying around and go home! I'm sure your help is needed in decorating for Christmas and for being with your big brothers and sisters. I am praying for you!