Easy? Who Needs Easy?

One of the most frustrating parts of having a heart baby is that nothing is just easy.  I’m not talking about the big stuff, like surgeries, caths, and whatnot.  I’m talking about the “simple” stuff.  You know what I’m talking about: colds, ear infections, in-office procedures.  That kinda stuff.  For a healthy child these are a peace of cake…for a heart child?


Want an example?  You got it.  During the last couple weeks in February, Nolan was actin’ a fool…just a complete angry cuss.  We decided to take him to the pediatrician and yep, ear infection.  Get antibiotics prescribed, 10 days, gone, right?  Nope.  The last week in February, Nolan was like a raging elephant with IBS.  He was inconsolable.  He was running a fever and showing low oxygen sats while I was in the Parents Symposium, and the cardiologist on call wanted him to be brought in to the Children’s ER just to be on the safe side since it was a Saturday.  So Bekah found someone to watch Grant and Hudson and I met her at Levine.  Of course, Nolan STILL had an ear infection and a bit of a fever.  Aaaaaand they were going to have to admit him…not because of the ear infection, no no no, but because of the low sats.  See, they think the fever caused the drop in sats and he’d have to go on oxygen til the sats went back up.  Awesome.  All over an ear infection.  Get my point?

So he was there a couple days, got several doses of STRONG antibiotics and his ears still looked like crap.  So they scheduled an appointment with an ENT Doctor, who recommended tubes be put in Nolan’s ears.  Here we go again.

Now NORMALLY, tubes could be put in right there in the office, bada-bing bada-boom, 15 minutes.  Not for Nolan.  You see, heart babies need (and SHOULD) utilize a special pediatric cardiology anesthesiologist whenever they have any procedure done.  They know all about their special hearts and what to look out for.  That’s good.  Unfortunately, it means it can’t be a 15-minute, in-office kinda deal.  Sooooo we had to have the ENT schedule with the anesthesia team and schedule an operating room at Levine Children’s Hospital.  Then we had to show up at 1pm for a procedure scheduled to begin at 3pm.  It actually didn’t begin til close to 4 because the operating room wasn’t available on time.  By the time they got Nolan to sleep and the anesthesia team was putting in an IV, the ENT was already done with the tubes.  Start to finish, it took about 20 minutes.  And the hospital is a good 35 minute drive.  Sigh.

I know, we all wish life could be simpler…and it’s these “little” things that really take a ton of time with a heart baby.  But as much as I’m always in a rush, it’s good to know they want to do it the RIGHT way.  And sometimes you have to keep tabs on those kinds of things.  GOD forbid something happens during a “simple” procedure and Nolan isn’t at Levine Children’s.  Sure, it’s inconvenient for a simple thing to turn into several hours or even several days…but at least that puts him at easy access to his heart team.  And for that, I’m grateful.  But look out, heart parents, there is no such thing as “simple”!

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on March 20, 2014, in awareness, life and tagged , , , . Bookmark the permalink. Leave a comment.

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