Monday, September 9, 2013

Baby Steps

Some of the first smiles we've seen.
Aaron is sick, very sick.  But we've also seen some smiles.  Music therapy was in this morning and playing songs for and with him.  They had a little shaker that he loved, and was on the beat with!

He's been pretty miserable, especially when his nose is getting suctioned out.  I don't get that one.  I mean, doesn't every three-year-old love to have their boogers taken care of?  It breaks his heart, but it also helps him breathe better, once he calms down again that is.

He's more consistently on 90% FiO2 (oxygen through the vent) than 100% but we've only bumped 70% a couple times.  In contrast, because of the different set-ups, he can only get about 60-70% total on his home vent when he's using 10 liters of oxygen, and our goal is to stay below 40%.  But that's a goal that's going to have to wait.  Right now, it's about giving him whatever he needs to keep breathing.  'Cause that's kinda important.

Getting a shaker-vest treatment to loosen up the junk.
He thinks he's at the spa, lucky kid.
Yesterday, we had a few spells where even on 100% FiO2, it was hard to get him above the very low 70's on his oxygen saturation.  Today our goal is to not have that happen.  There's a few tricks we can still pull out.  They may sedate him a little if he struggles again, we may increase his PEEP a tiny bit.  Or if it persists, even the way it is over the next 24+ hours, we may look at using nitric oxide to help open up his lungs.  We've used it before with good results, but there are always challenges, too.

So we've had "the talk" with a couple of doctors already.  How far do I want them to go?  What's our plan?  Can I say that while I know it's important to keep the lines of communication open and clear, I HATE these talks.  And as far as I'm concerned, right now, nothing's changed.  He's still a full code.  There will come a time when he's done and ready to go Home, and it will break my heart.  But I'll listen, and I'll acknowledge it.  But I don't believe that time has come.

Our challenge right now is to give him the support his little body needs to work through this virus.  And it looks like that's "all" that's going on.  None of his cultures taken Saturday evening are growing anything.  Man, I've never liked colds, but I've now truly learned to hate them.

So we'll baby-step our way back to health, one smile, one treatment, one song at a time.

Singing a bedtime song to Aaron

Start by doing what's necessary, then what's possible, 

and suddenly you are doing the impossible.
St. Francis of Assisi


  1. Thanks for the update. Continued prayers from Virginia!

  2. I love his beautiful smiles in the video. Sending so many healing and comfort thoughts your way. He needs a "virus go away" song. Thanks for the updates, and I'm glad to see he's still smiling through it all. What a rough time, though.

  3. I hate "the talk." We've never been asked about it yet ere in Cali, but every single time he was admitted to PCMC the docs. Most who already knew him, would ask if he had a DNR and what our wishes were. It can be so deflating. There's lots more that could be going wrong that's not, keep going sweet boy, your doing great!

  4. Ah - "the talk." Had it every time Lilly was hospitalized for something. I'm praying Aaron's time has not come yet either. But I'm also praying that when it does, God takes him very gently. Hugs and prayers for you all!

  5. Thank you so much for the beautiful video! Blessings to you all!