Tuesday, December 23, 2014

We'll Be Home For Christmas ... If Only In My Dreams

Yeah, the title seems to say it all.  It looks like we're going to add Christmas to our list of holidays in the hospital.

The change up in trachs went well last week, and it looks like just in the nick of time.  Aaron  got sick on Friday with a fever and more "stuff" in his trach.  But the fever was short-lived and the goop was more froth than goop.  (Hopefully that walks the line between some info and too much info?)

By Sunday, he was doing pretty well, in fact, I actually wondered if we should have gone to church anyway.  Monday afternoon, he started to head the wrong way.  Trach secretions turned yellow and thicker.  Monday night, he popped another fever, 38.7 (101.7) and so I decided we needed to get checked out.  I was hoping it was a new virus, and we'd come home, but there was also that chance that it'd turned into a secondary bacterial infection.

I totally discounted (ignored, buried my head in the sand, fill in the blank with the appropriate term of De'Nial) the possibility that it might be a new virus we COULDN'T handle at home.

His x-ray actually looked pretty good, a little patchy but pretty much his norm.  They only sent testing for RSV and Influenza A and B, and those came back negative, too.  Blood work was nigh unto impossible, the kiddo just wasn't letting anyone have access to his veins.  The ER doc talked about just putting him on an antibiotic to cover any possible infection and sending us home.

The problem with that is Aaron ends up on a lot of antibiotics.  You know those warnings about too many antibiotics and resistance, etc?  Yeah, a very real risk for him, so I wanted to get those labs and see actual evidence of it first.  So they called down a peds nurse from the floor.  Even she couldn't get them.

In the meantime, Aaron decided he was bored, or something.  He started coughing up all sorts of nasty stuff, and desatting, too.  When he hit 76%, I rang the staff button and told them we needed help, and got his bag out and started bagging him.  He ended up on 15 liters for a while.  We were able to wean down to 10 liters, but that's still way too much for home.  My oxygen concentrator only goes to 10 liters, so no wiggle room at all.

In the end, he was enough of a mess that we actually ended up Lifeflighting up here.  He was dicey enough that the PICU doc wanted him brought in by a pediatric team, and the ground crew had just left to go pick up another kiddo (actually upstairs from us at American Fork Hospital).  And with the way he was trending, they didn't want to wait the several hours it would take to have the ground crew transport the one child, and come back and get us up here.  Frankly, in the end, coming by chopper was probably a pretty good call.

So he got his second chopper ride, and I even did okay on it.  It was actually really smooth.  I've been on rougher car rides on some freeways.  He got the same Lifeflight nurse that picked him up four years ago at the house and now we're in the PICU, on their ventilator, using a lot of oxygen and pulling thick, green glue out of his lungs (yeah, you read that right, "glue" not "goo").  And we're both pretty wiped out.

So along with a couple Halloweens, a Thanksgiving (and a couple more Thanksgiving weekends) and Mother's Day, we'll add Christmas into the mix, 'cause ain't nobody thinking this kid's going to be out of here by then.  We probably won't even be out of the PICU by then.

Santa will probably come later for all of us, and we'll just work it out.  It's not my favorite way to spend the holiday, but it could certainly be worse.  There are a lot of tiny stones in cemeteries being decorated for Christmas.  I remember so vividly standing over his cradle on Thanksgiving morning four years ago, crying that I just wanted one Christmas with him.  We're coming up on our fifth.  He's still here.  I don't get to only see him in my dreams.

Yeah, it could be much, much harder.

May Peace be your gift at Christmas and your blessing all year through! ~Author Unknown


  1. You are such a brave woman and an angel mother. I live in fear of helicopter rides! So sorry you are inpatient for Christmas. Sending love and hugs.

  2. Thank you for your post. I have some what walked your walk. Thank you for the wish of Peace. May you find the spirit of Christmas in the hospital (it shows up there also) . For mother of warriors we have to seek calm and peace when our world is turned. Blessing upon you and your family.