Get to the ER!


As a heart parent, and if you’re anything like me, you sometimes run these crazy scenarios through your head about things going wrong: like what if an emergency happens during rush-hour, or what if Nolan needs to see a doctor but we’re not in town?  That’s part of the new reality of being a heart parent: you don’t necessarily expect the worst, but you do realize anything can happen and you try to prepare.  This incident sure made that a reality. 

My wife was eyeing this rug that someone was selling on craigslist.  It was a massive rug, something like 14′ x 10′ or thereabouts.  She wanted to go see if and potentially pick it up, but she needed my help.  I agreed to go with her in the van after I got off work: the lady’s house was maybe 20 minutes from us at absolute most.  My mom agreed to come to the house to watch the kids while we were gone that short while.  Grant was a pretty easy-going baby, so he was a piece of cake (relatively).  We laid Nolan down in his favorite swing and plugged him in for a feed.  Then off we went. 

Meanwhile my wife and I are about 15 minutes from the house, enjoying some time alone together for a change, when the phone rings…it’s my mom.  And Nolan is SCREAMING in the background.  She says Nolan “kicked out his tube.”  Naturally our first question was, did he just dislodge the tube itself?  If so, that’s not TOO bad…it would hurt him but he’d be ok after a minute.  No, she said, the whole thing came out, button and all.  We freaked.  I turned the van around and drove like a MANIAC back home.  Why?  Well the button CAN come out, but you need to replace it before the stoma (hole) closes.  If it closes, they would have to surgically re-insert the MIC-KEY button…that means another stay at the hospital, more anesthesia, etc.  That ain’t happening. 

As I broke several speed laws and honked at everyone in sight, we called a neighbor just to come and help settle with Grant.  We got home, I rushed inside, thanked my neighbor and grabbed Nolan.  We put him in his car seat, ran back to the van and hit the road again.

This is where it gets wild: we actually have a hospital close to us…like 10-15 minutes away.  But here’s the thing: it doesn’t have the best reputation (they’re working on it, though, to their credit).  I mean, people have said if they have a heart attack, not to take them there.  Yeah, it’s like that.  I had ZERO confidence they’d know what to do with a heart baby and would probably just airlift him to Levine Children’s Hospital anyway…that is, after a 2-hour ER Wait time.  We had no choice but to go directly to Levine Children’s Hospital’s ER.

Problem is, it’s 35 minutes from us on a good day.  But I was hauling.  I was moving around cars, when I hit the enevitable…it started to rain.  And in Charlotte, some drivers are like this: Instant Idiot, Just Add Water.  We slowed to a crawl and it took forever.  The whole time we’re both freaking out about Nolan.

We finally made it to the ER and I was so worried that the stoma had closed and that Nolan was surely looking at another surgery to replace it.  While Bekah ran in with Nolan I tried to find parking…of course, the lot was full.  Luckily the guy let me park in a different lot for free, but it was a bit of a walk.  As soon as I parked the car, the skies opened and became Niagara Falls all over me.  I made it to the ER looking like a just went swimming in my clothes.   They took Nolan right back and asked the usual questions several times over, as usual.  We made it crystal clear that he was a heart baby and the heart team would need to be notified. 

While a GI Doctor on call was being notified, the ER Doctor was a very quick-thinker.  He noticed that he couldn’t push the button back in, but that Nolan’s stoma was still open a bit.  He had a nurse grab a catheter, which he placed in the stoma to hold it open.  This would keep it in place and allow the GI Doctor to determine what to do next.  The GI Doctor came and said he would try to widen the opening to place the button back in, which would save a round of surgery.  We were thankful for that.  Nolan was moved to the 9th floor, which we’d never been to before, and an NG Tube was placed in his nose so he didn’t miss feeds.  He HATED that.  I knew the tube bothered him and irritated his throat, which didn’t help with his reflux and spitting up.  It was terrible…he was miserable and so were we. 

Eventually I left to run back home for some clothes and whatnot.  When I came back, the GI Doctor came back with some tools that looked like giant metal toothpicks of varying thicknesses.  He asked us to step out and I was heartbroken to hear my Nolan screaming in pain while the stoma was stretched back open and the MIC-KEY button was replaced.  The doctor was very nice and said Nolan would get something for his discomfort, but that feeds can resume the next day via the button. 

After an overnight stay, we got to take Nolan home once he proved he could tolerate his feeds ok.  Man that was nuts…and I REALLY don’t want that to ever happen again, I just can’t take it.  But kudos to the Children’s ER team…they were amazing and really friendly, just like the rest of the LCH staff.

So yeah, if your child ends up with a MIC-KEY button, take this as your warning: be careful with that tube!

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 January 23, 2014, in feeding and tagged , , , , , , , , . Bookmark the permalink. Leave a comment.

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