Saturday, April 5, 2014


We saw a few of those impish grins today.
Love them.
Aaron is holding on okay right now.  He's continued to worsen, but that's expected.  He's only about 48 hours past the start of his first symptoms, so it should peak tomorrow.  Last night about midnight, they made the decision to switch him over to the super-duper ICU ventilator.  It's good in many ways.  He can get a lot more and better support from it.  It also gives back more information which, in turn, means he doesn't have to be poked for labs as much.

Speaking of which, his protected brush sample has started to grow out some nasties.  That's where they take a sterile brush and go down into the lungs and scrape off some cells for testing.  Yeah, it's about as much fun as it sounds like, and he's not real thrilled with the process.  So since they may need to start antibiotics, they also drew blood today for blood cultures.  Can I just say, I'm really hoping they don't come back positive?  We've already been there, done that, and I can live without doing it again.

That pad under his IV makes a great chew
toy, at least from his point of view.
We're still pulling tons and tons of "copious" (his nurse's favorite word for him today) secretions out of his trach.  And they're a thick, nasty yellow color.  More signs that he hasn't hit bottom yet.  BUT, he's happier than he was.  He's spent quite a bit of time awake today, and we put up his toys in an effort to try to distract him from his IV.  See, it's got a fun blue cap on it and it's in his right hand.  So he's been trying to hold his hand in the air and catch the cap in his mouth.  Little monkey!

But about that title, Sisterhood.  Yeah, it's a pretty good thing.  Last December a neighbor and her son ended up her unexpectedly.  I felt bad that I didn't find out until many weeks later.  I told her I wished I'd known because I had friends up here who could have helped her.  "Really?  Friends up there at the same time?"  I always have friends up here.  And right now is no exception.

In fact, today there were three of us in here (yeah, "here" meaning the PICU, not just the hospital), the other two also battling rhinovirus, but they're (hopefully) on the tail-end of it.  And we can talk and joke and commiserate together.  And there are more scattered on some of the other units.

But then, the need for this sisterhood was really brought home tonight.  See, there was a Code called on the third floor.  My own heart always catches a bit when it happens, and I pray for the family involved.  Then they started moving around a bit more next door, and there was talk that the code was coming into the next bed space.  My nurse was obviously going to be busy, so we got things set up for Aaron's food and meds early, and then waited.  And they waited.  And waited.  And waited some more.

Meantime, I'm playing with Aaron, and suctioning him as RT was giving him his breathing treatment, and I realized that his clothes were just nasty.  Kinda happens when you've got green goop coming out, and blood, etc.  Yuck.  So I went around the corner to get some fresh jammies for him.  As I came back, there was a crowd between me and Aaron's bed space.  The patient had arrived.

Then I saw Mom's face.  And I knew her. That Code just got a whole lot more personal. My heart just sank and as she came towards me, I opened my arms and we just held each other as she cried.  Her little one is stable now, but how scary.  Mom's okay, too.  See, when your little one, your heart and soul, faces these things, you do, too.  And I'm glad I was here.  We share a bond in this world of medically challenged children.  All of us here do.  We've learned and fought for things that no parent should have to, and when the chips fall, we're here for each other.  Yeah, a sisterhood.  One we never thought we'd be part of.  But a blessing, an incredible blessing none the less.

Help one another, is part of the religion of sisterhood. ~Louisa May Alcott

1 comment:

  1. This post brought me to tears Rebekah. I have been a part of this sisterhood and you were there for me too several times. I don't know if I ever told you how thankful I was to meet you and become friends. I remember one day in particular that I really needed a friend and you were there and just held me too. Thank you! I hope that things start getting better soon. Prayers for you and Aaron. I love you my sister!