Wednesday, April 25, 2012

Hug Your Loved Ones

Last night was a quiet night in our room, at least from my standpoint.  Aaron played a lot and pulled out his IV.  It's telling that they didn't call for another one immediately.  Standard PICU protocol calls for IVs all the time, just in case.  And in Aaron's case, since he's such a hard stick, it's almost a standard policy even on the floor.  But for now, he has no IV.  We'll see what the team says when they round.

They sent an ear culture to see if they could figure out if he's got infection drainage or just residual from his ear drops.  Funny, I know.  I think ENT requested it.  I'm not sure.  But anyway, his nurse and the resident over him were trying to figure out how to make it happen.  They ended up using a throat swab in his ear and then sending it.  Just like a strep test. 

So overall, it's a very good picture for us right now.  They had thought start trying to wean him off his nitric oxide last night, but he did have a couple hiccups.  He bounced around a little bit, once or twice as high as 80%, but spent most of the night at about 50%.  So again, rounds will be interesting as we figure the course of action for today.

Down the hall from us, it doesn't look very good.  Frankly, when slightly older parents are escorting a crying young mother into the PICU at shift change, it's never a good sign.  And the waiting room as I passed though was crowded with others either looking very somber or crying.  If it's the patient I think it is, he was a vibrant, active young person not very long ago.  This was nowhere on their horizon.  As recent as the parent's PICU lunch last Thursday, his mom was quite hopeful. 

Yesterday, as Rainbow Kids stopped by, we had a discussion about children and death.  That is what they often deal with as the palliative care team.  In the T18/13 world we see a lot of it and she asked how I cope.  I was honest.  All of them make me sad and I pray for their families.  I try to send them a note telling them.  I've learned that it's not necessary to have the perfect thing to say, but "I'm sorry and I'm praying for you" goes a very long ways.  I don't know how they feel and never will because my journey and my feelings are unique and so are theirs.  But I can say I'm sorry.  Some of these kids, and their parents know who they are, they knock the breath out of me.  I've cried many, many tears over them, and I still do when I share their stories.

I always wear a butterfly.  Butterflies are symbolic of lost children.  The caterpillar goes through an almost magical transition to become this beautiful, fleeting creature that leaves so many smiling just when they see one, and then is gone.  I think one of a parent's greatest fears after their child has passed is that he or she will be forgotten.  So I wear a butterfly in honor of those children, as a way of saying, "I won't forget.  You are loved, you are important." 

So take a minute, today, and hug your children and your loved ones.  Let them know they are important.  This life is fleeting and we don't know how many days we have together.  Make the most of your moments.


  1. Absolutely Beautiful Rebekah!! So thankful that last night was a quiet comfortable night for you both! Hoping and praying that Aaron's smiles are more frequent and he's on the mend so you can go home! We LOVE butterflies and I love to see them when i'm out as they remind me of Jordan and all of her Angel friends! Continuing to send big hugs and prayers!!!

  2. There is just so much sadness in the PICU. From our little happy corner, I've witnessed so much sadness in the rest of the unit. I think of those butterfly kiddos every single day, and am so thankful for how much our family has, too.