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Get to the ER!

Helicopter

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!

The HEARTest Yard

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Early on in this blog you recall that I wrote a post about Greg Olsen from the Carolina Panthers, who also welcomed twins a couple months before we did.  One of his twins, like Nolan, had Hypoplastic Left Heart System.  Greg has been an incredible spokesperson and advocate for CHDs and HLHS, and it was really cool to have him right here in our city.  While we were in Progressive Care with Nolan post-cath, I saw on twitter that Greg would be doing a presentation there at Levine Children’s Hospital.  I tweeted Greg and asked if anyone could come and he said yes.  So while Bekah was working on discharge with Nolan, I went down to the lobby to check out the ceremony. 

Most of the cardiac team was there, including a lot of Nolan’s doctors and his surgeons and nurses.  The media was there too and some other heart families.  I just hovered around the back trying not to get in anyone’s way…plus I just spent the night at the hospital so I looked like a complete wreck and I didn’t want anyone to think I was just some crazy person who stumbled into the lobby.  I did get to meet someone named Casey who was a heart mom and her son Murphy, who also has HLHS.  It occurred to me that Murphy was the first HLHS kid I had actually met.  And he looked GREAT!  Completely healthy and cute.  I got to chat with Casey for a little bit about Nolan and how things have been going so far.  I also got to see Nolan’s surgeon, Dr. Peeler.  I was actually really excited to see him and I said, “Hey Dr. Peeler!”  He said hello and moved on.  Good enough for me.  Then the ceremony started.

It began with someone from the Carolinas Foundation talking about Greg’s family and their willingness to support LCH and the heart program.  Next up was Dr. Peeler:

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He talked about his experience with HLHS and particularly how the “interstage,” which is the period of time between the 1st and 2nd surgeries, is very critical.  He said that the staff at LCH managed to get HLHS kids to survive via the first surgery…now he wants to ensure that HLHS babies THRIVE after their first surgery.  I was fascinated.  This was good stuff.  He talked about how Greg Olsen’s efforts have allowed them to develop a program called The HEARTest Yard, which will help parents financially with in-home nursing care, physical therapy, speech therapy, etc., during this interstage period.  You know, I was SO thankful to have Dr. Peeler as Nolan’s surgeon…I knew he came with a lot of credentials and recommendations, but it wasn’t til this moment that I realized that not only did he know what he was doing, but Dr. Peeler REALLY cared about the kids he treats…he doesn’t just want them to survive, but to thrive…and he realizes it’s a team effort.

Next up was the man himself:

GregOlsen2

Greg Olsen came up and spoke about all the fundraising they did to help develop The HEARTest Yard (over $230k!!!).  He talked about how he had dinner with Dr. Peeler and said “You’re the expert…so how can I help?” and Dr. Peeler laid out all his ideas about helping kids through the interstage process.  Greg proved to be very well-versed in the heart program and HLHS and I was really happy to have an ambassador like him in our corner.

After the ceremony was over and the big ol check was presented, I actually got an opportunity to meet Greg’s wife Kara.  I told her that we also had an HLHS baby that was a twin and she seemed genuinely excited to hear that since it’s not a common thing.  She was very nice and took quite a bit of time to chat with me.  Finally I got a chance to meet Greg and talk with him for a few minutes.  I told him about Nolan (he even said he remembered my tweet…yeahhh boy) and thanked him so much for everything he did.  He’s a nice guy…and big as a house.

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During all this, Nolan was discharged and he came downstairs with Bekah, who also got to meet Kara Olsen.  It was really nice that I got a chance to be a part of this.  It’s funny, Nolan’s cath was postponed twice and it kinda got annoying, but this time it worked out nicely.  It was good to meet other heart parents and feel the love!

CVICU Staff = The Best

LCH

 

I definitely can’t write about Nolan’s journey without taking the time to speak about the staff at the Cardiovascular Intensive Care Unit.  Everyone, and I mean, everyone there treated us like royalty.  They were polite and thoughtful, they took time to answer our questions, and always asked if we needed anything.  Shoot, CVICU even had free snacks and whatnot!  Cartons of chocolate milk became my daily habit…yum.  The nurses we had were amazing, every single one.  We would talk about what the near future would look like for Nolan, we’d talk about what brought them to Charlotte (if they weren’t originally from here), we’d talk about music, tv, and movies.  Sometimes things got funny: like when they’d ask me where I worked.  When I’d answer hospice, they’d all act the same way: “Oh my gosh, I don’t know how you do it!” and I’d be like, “Really?  Really.  You got kids here with chests open and on fifty billion machines and you ask how I do it?!”  Or even better, there was one night I was with Nolan and I was just WIPED OUT…so I  sat in a chair in the room with my head on the window sill and I was out cold.  So the nurse turned down the lights and stepped right outside the room to the nurse’s station.  I awoke a little while later to overhear a couple of the nurses talking about their dating lives, and it made me laugh.  They’re both human and superhuman at once.

I do want to talk in particular, though, about one nurse: Stirling.  She was Nolan’s first nurse after his surgery and she did a lot to make us feel at home at the CVICU.  The first thing you notice about her is that she works really hard, yet is always really happy and positive.  And she loved the mess outta Nolan, you could tell.  One day we were talking with her about how Hudson wouldn’t be able to meet Nolan for a long while due to the flu ban.  So what did Stirling do?  She made Hudson a little card and signed it “From Nolan.”  It blew my mind.  I mean, Stirling was busy keeping Nolan alive, and if that’s all she wanted to do, that would be a-ok with me.  But she went way above and beyond that.  It was so kind and thoughtful.  And she kept on doing things like that: getting him socks or a little hat to keep him warm, or finding fun blankets to put in his bed.  Even when Stirling had to rotate on to another patient, she always made time to come visit Nolan.  We were blessed to have her as Nolan’s first nurse: she’s the prime example of what makes the CVICU at Levine Children’s Hospital so great: we really felt like VIPs there, even though we didn’t necessarily want to be there, if you know what I mean.