Dear Phlebotomists…

Heart parents, you know this scene: you’re in the hospital with your little one – maybe it’s post-surgery or an admission for something else.  Either way, your child has been fussy or in pain and sleep has been really hard to come by.  Finally, in the midnight hour your kiddo zonks out and you turn out the lights to enjoy hopefully a few hours of uncomfortable sleep there in the room.

And then…THEN…comes the knock.  I bet your temp is rising right now thinking of it.  You see them in the doorway, pushing a little cart wearing a lab coat.  It’s the phlebotomist…they need a blood sample…and it’s 2 in the freakin’ morning.  And this phlebotomist wants to poke and prod at your child…at 2am…to get that sample.  And if you’re lucky, maybe they get it on the 2nd or 3rd try and you turn into this:

And you wanna yell and scream and throw things, your kid is screaming and no one got any sleep.  And guess what…they’re just gonna do it again and again.

Phlebotomists, this is for you:

We don’t hate you…I promise.  Your work is important work and often challenging work, and you’re working in a system that has set you up to fail in our eyes.  And that’s not fair.  As a heart dad I want to take a step back and offer some ideas to help your relationship with heart families:

Be Courteous and Communicate

I know you have a job to do, but good God almighty it’s 2 in the morning!  So don’t barge in the room and barely give me the time of day before getting stabby with my kid.  Smile…introduce yourself.  State what you’re doing and why.  You’re there at 2am because the Doctor wants to see lab results early in the morning in time for rounds.  But how often do you say this to families?  I’m willing to bet it’s not that often.  If you do, then bravo – I mean it.  If possible, think through some other alternatives.  Communication is key: tell people what you’re going to do.

Have Some Empathy

This is a struggle for many healthcare workers.  Again, I know you have a job you need to do but I act like an angry bear not only because it’s 2am.  I act like an angry bear because I’m exhausted, my son is exhausted and we’ve all been through so much.  I’m stressed, I’m scared, and my anxiety is through the roof.  So when you come in to the room and you get the angry bear, you label me as angry.  I get it.  But you don’t see all those other things that I’m going through.  And unless you’ve been in a situation like mine, you’ll never completely understand…and that’s ok.  You don’t need to act like you understand, but rather you need to realize that a big part of your job – and all healthcare workers’ jobs – is to help alleviate anxiety in patients and families.  You can do this through communication, and giving people a moment to vent if need be.  Most of all, try to imagine yourself in this parent’s shoes: you’re scared and all you want is for people to give the very best for your child.  So then you need to step up to the plate and do your best.

Kids Aren’t Adults

Sometime Phlebotomists aren’t comfortable with children…they’re used to working with an adult population.  Well if you’re in a pediatric setting you just NEED to learn.  It’ll be better for your job success if you learn to be friendly and a little fun…learn from the people who are good at this sort of thing.  See what they do and try to emulate that.  And remember that this is a living, breathing child that is well-loved by his or her parents…they’re not just a big vein laying there in the bed.

Just Listen and Anticipate

I’ll never forget a time when a Phlebotomist came in to take Nolan’s blood when he was recovering from the Norwood Procedure.  Before he was able to take a stab at Nolan (literally and figuratively) I asked him why he needed to draw blood this way when Nolan had a central line.  His response was that he wasn’t able to do this via the central line, and a nurse would be needed for that.  And then he stood there.  I raised my eyebrows and was like, “Wellllll?  Are you going to get the nurse or should I call?”  It didn’t occur to him one moment to bypass the pain, interrupting my son’s sleep, and getting an easy sample.  Sigh.  Or how about when we try to get ahead of things and say “He’s a heart baby and is a really difficult stick in that area” only for them to ignore you and try anyway…then my son ends up a little pincushion.  You think I like that?  You think my son likes that?  And you wonder why I become the angry bear.  Maybe a parent is suggesting ways to calm their child…listen.  It will be better in the long run!

Be the Change

Are you tired of getting the angry bear all early morning while you’re just trying to do your job?  I can definitely see that.  But like I mentioned before, you’re working in a system that’s designed for you to fail.  For years you needed to get early morning blood draws so you can get lab results to a waiting physician first thing in the morning.  That’s the way it’s always been.  But that just doesn’t work, man.  It doesn’t.  If rest promotes healing, then how in the world is it helpful to constantly interrupt sleep?  I know there are Phlebotomists out there who absolutely hate this…and if that’s you, then maybe you need to be the one to say “There HAS to be a better way!”  If you do this, if you step up on behalf of your patients – and yourself – I assure you that you’ll be the biggest hero among heart families.  Heck, among most families!  Talk to administration about it…make some noise…put your patients first.  This is how changes begin and you can play a major role in significant change in the future…and you can kiss the angry bear goodbye too!

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Listen I’m not hating on Phlebotomists today…I can’t imagine how busy and stressful your job is.  You’ve got time crunches and probably pressure of people watching you like hawks expecting you to nail it on the first try.  Not to mention people just hate needles so no part of your job is easy.  What I’m saying is that this can all be much more successful if we’re ALL willing to work together for our heart kids.  And heart parents: don’t be needlessly difficult either – be open to suggestions…you can win more if you play as a team.  If you’re a Phlebotomist and you’re doing awesome and you have some pointers, please share them in the comments!

Hey You, Don’t Forget About You

I’ve been where you are…the glazed look in your eyes, the nearly zombie-like foot shuffle, the Lord-knows-how-old crust on your t-shirt.  You’re the dad who is on day 4 in the hospital after your child’s most recent heart surgery.  I see you standing in the cafeteria, meal ticket in hand thinking, “If I eat another chicken salad sub, I’m gonna lose my freakin’ mind.”  Dude, I’ve been you.  Now that I work at a hospital, I see you guys all the time…I call these parents “ghosts upon the earth,” since you get to this crazy place where you exist but you kinda don’t…you’re just floating through the motions until you get to safely take your child home and it’s like someone gave your body back to you at the front door.  Well guys, this post is for you…whether you’re shuffling through the hospital or doing it at home.  I know this life is a challenging one but we have to remember to take care of ourselves!  Obviously our little heart warriors get a lot of attention…they need that attention.  There’s meds to be given, tube feeds to administer, appointments to attend, and futures to fret over.  The reality, though, is we’re killing ourselves with stress.

There’s been a big shift in healthcare towards more holistic styles of healing – or integrative therapies, as they’re sometimes called.  But before you write me off as some kind of hippie, please hear me out.  Mainstream healthcare is slowly getting on board with the idea that some of these more non-traditional therapies can actually be very helpful in the big picture.  To be honest with you, they weren’t anything I ever put much thought to until about the last year or so.  My job has exposed me to several of these therapies and I have to say they’re a great thing for the healthcare system and for us as heart parents.  So here’s a few:

Healing Touch

Is it massage?  Is it chiropractics?  Is it weird?  Nah.  To be honest with you, I am far from being an expert in healing touch because I don’t completely understand it.

 

According to the Healing Touch Program website, “Healing Touch is an energy therapy in which practitioners consciously use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health.  Healing Touch is a biofield (magnetic field around the body) therapy that is an energy-based approach to health and healing.”

Now before you get all like “That’s some voodoo, bruh!”  Hear me out.  I’ve tried healing touch twice and whether or not the results were all in my head, I have to say it worked splendidly.  We recently had some healing touch practitioners at work and I sat down for a 10-minute “centering exercise” as they called it.  Basically I saw in a chair and the practitioner put her hands gently on my head, neck, and shoulders.  All the while I was encouraged to breathe and listen to some soothing sounds on a radio.  After 10 minutes I felt completely relaxed, completely focused, and very rested.  Still can’t explain it, but I felt like a million bucks.

The good thing is a lot of hospital employees are going through classes to become healing touch practitioners, so ask around and see if someone can come to you and even do 10 minutes of healing touch.  You will feel the stress melt away, I promise it’s worth the time.  It’s non-invasive, you don’t have to take any meds, so the only thing you have to lose is a little time.

Aromatherapy

For a lot of people, “aromatherapy” means heading down to Bath & Body Works and buying a lotion that smells like a beach.  Not true.  I bet if you spent 45 seconds on your facebook timeline, you’ll find someone who is all about their essential oils.  It’s like the next big thing.  The reality, however, is that aromatherapy is nothing new.

Think about it, way back in the day before people were able to pop a tylenol or apply Head-On directly to the forehead, people used a lot of different ways to heal using what was readily available to them.  Often this was plants and oils.  Fast-forward to today and those same oils are becoming very popular as people seek ways to heal without medicine or invasive procedures.

I learned about aromatherapy about a year ago at an integrative therapy educational session at work and thought it was pretty awesome.  It’s amazing how you can just basically put a cotton ball in a little cup, add a few drops of essential oils to it, put it next to you on your desk and really get your heal on.  For example: stress got you feeling nauseated?  Use some ginger essential oil, which settles the digestive system and stimulates appetite.  Sound like bunk?  One day I was feeling extremely sick to my stomach at work and needed to stick through it to work a particular event.  I sat at my desk with some ginger essential oil and felt better in no time.  It was pretty awesome.

There’s so many great uses for aromatherapy and I encourage you to research them more on your own.  Look into things like Bergamot, which is an antidepressant, or Lavender, which – when mixed with vanilla – can help reduce fear and anxiety prior to medical procedures…hint hint.

Just…Breathe

When I was in college I took a lot of psychology classes and I’ll never forget one professor who taught us about breathing exercises to reduce stress.  She said “If you’re waiting on that big job interview one day and you’re freaking out, just close your eyes, take a deep breath through your nose and release slowly through your mouth.”  I’ll never forget it because it works.  Taking a few moments to focus on your breathing can really help relax you and relieve some stress.

An exercise that I found works great is to breathe in slowly through your nose, counting to 4.  Then hold it for 2 or 3 seconds and release slowly through your mouth for another count of 4.  If you close your eyes and do this a couple times, you’ll be amazed how relaxed you can feel.  The best thing is you can do breathing exercises wherever you are: in your office, at home, at the hospital, in the car (don’t close your eyes for this one).  And again, no meds involved in helping you feel better.

There’s lots of great breathing exercises out there in a wide range of difficulties.  If you want to take it to the next level, check out this list: http://healthland.time.com/2012/10/08/6-breathing-exercises-to-relax-in-10-minutes-or-less/

Rock it Out

Anyone who knows me knows that I am pretty obsessed with music.  Gotta have music when I drive, sometimes I’ll put Pandora on and let the kids dance around, I love concerts.  Music is a powerful thing.

Think about it: you listen to that one song that reminds you of a person or place in time and it’s like it brings you right back.  There is music that can bring you happy thoughts and memories and there is music that can calm…I know everyone has that song or songs that can calm them down.

More recently a lot of work has been going into studying the effect of music on the human brain.  I’m sure by now we’ve all seen the video of the old man in a nursing home who can’t even remember his own daughter, but when they play his favorite music, he sings and becomes far more responsive than he was.  Music has been shown to unlock memories that sometimes we think have been lost, whether that’s through time or illness.

So I encourage you to take that time and let music set you free.  If you’re going for a hospital stay, pack some music with you on an mp3 player.  If you can’t do that, step away for a few minutes, lock yourself in your car, and listen to some music.  It’ll be like a nice re-set for your mind.

Get a Hobby Already

Work work appointments work appointments clean up barf work work appointments laundry dishes cooking work work clean poop work.  That’s life, right?  We run ourselves into the ground doing things that – while important – are depleting our energy and we don’t make time for ourselves.  Get…a…hobby.  It’s not a selfish thing to do.  It can be anything: play basketball, learn an instrument, collect stamps, learn to breakdance, master the unicycle.  Whatever, just do it.  If you know me, you also know that my addiction to coffee is right up there with my obsession with music.  For the last few months I’ve begun roasting my own coffee beans at home using a popcorn popper.  I order the beans raw from a supplier, and when I want some coffee, I take my popcorn popper outside, roast the beans, and the next morning I can grind up some super-fresh coffee.  You just can’t get it any fresher!  And it makes a world of difference…plus the roasting process makes your clothes smell AMAZING.  I really enjoy the process of roasting coffee…it just makes me very happy, and when I drink a fresh cup and it tastes good, I feel very accomplished.  And as weird as it sounds, I really enjoy just watching those beans spinning around in the popper, turning from green to brown.  It’s a relaxing sight.

A hobby is a much better relaxing activity than sitting around binge-watching shows on Netflix (though that can be fun too) because it stimulates a level of creativity and provides a nice level of self-esteem.  And I don’t know about you, but that sounds like a really great thing.

But Wait, There’s More

I could go on and on with all of these self-care ideas, but I don’t want to make you cross-eyed: so I encourage you to do some more research on the interwebs about things to help you relieve stress and relax.  Look into things like mindfulness and guided imagery.  Maybe acupuncture is for you.  I know the life of a heart parent, heck ANY parent, is a stressful one.  I’m not saying you shouldn’t be concerned about things.  But for right now, you are your child’s best advocate and their companion along this long journey.  The reality is, if you don’t stop and take care of yourself, you’re going to break down, you’re going to get sick, or worse.  Don’t let your heart warrior go at it alone.  Give yourself all the best shot of success by taking time out for you.

 

 

 

Time to Burst the Bubble

Friends!   March is here…and you know what that means: warmer temperatures, flowers blooming, birds singing, spring training baseball, sunshine….and the end of the dreaded flu season.  Yes, the flu is the bane of every heart family’s existence…you know that during the winter months you lock yourselves up at home and try your best to stay out of places with too many people.  For us the biggie was staying clear of church and watching it on our church’s Roku app.  It definitely wasn’t the same, but we go to a big church with a ton of people and it just increased the chances of any of us – especially Nolan – getting sick.  If you recall reading in this blog, Nolan caught parainfluenza in November 2013 and ended up in the hospital for a week.  .  So yeah, the flu is no joke.

But here in the Charlotte area, the weather is finally starting to warm up a bit and we can hopefully look forward to popping the flu bubble

This past weekend we took the kids to a museum called Discovery Place Kids, which had a bunch of fun stuff for little ones their age.  The kids had a blast:

Nolan especially loved the Water Table: he got himself (and people around him) completely soaked:

 

While official flu season may be close to over and you start emerging back into the world, remember that your heart kid can still catch a lot of big, bad, yucky crud, so you have to be smart about it.  The first – and easiest – thing you can (and should) always do is practice good hand hygiene.  Wash your hands regularly and have some good hand sanitizer handy.  If people come visit, make sure they practice good hand hygiene too.  Next, use your smarts: don’t go where people are sick and don’t let people touch your child’s face and get all up in his or her grill with their coughing and snotting.  Yuck.  Finally, remember that people will get over it if you can’t go to everything they invite you to.  I know you find yourself explaining it over and over, but they’ll live.  Stick to your guns.

We were fortunate not to have to battle the flu this winter.  We’re looking forward to getting back to life as the weather begins to warm up.  As we greet the spring and say bye-bye to flu season, we can soon say:

Swell Hearts

It’s hard to believe it’s already been two weeks since the Congenital Heart Legislative Conference.  There’s still so much to write about and you’ll continue to see some posts related to the conference.  Today I’d like to highlight a really important topic for not just heart families, but lots of other people as well.  Today I’d like to introduce you to an extraordinary person that I met during the Legislative Conference.  After checking in for the Conference, I decided to walk up to a random table and introduce myself.  The first person I met was a 19 year old named Jacob Kilby who was from California.  As we chatted, I learned that Jacob – like my Nolan – was born with HLHS.  At a very young age, however, Jacob needed, and received, a heart transplant.

Now, at 19 years old, Jacob needs another heart transplant to save his life.  And this isn’t Amazon.com: you can’t just put in an order for a new heart and just wait for it to arrive.  There is a list you’re placed on and then you have to wait for the right heart.  So Jacob waits.  That’s heavy stuff.  What’s awesome, though, is that you wouldn’t know if you got to know him a little bit.  He’s got a ton of energy, is a surfer, and has a great sense of humor and adventure.  I was really fortunate to spend the two days of the Conference getting to know Jacob a little bit, along with his Aunt Charity, who supports him on his journey.

The really cool thing is that he recently started his own foundation to promote organ donation called Swell Hearts.  As I mentioned before, there are no organs on-demand: they have to come from somewhere, specifically from donors.  So Jacob is taking the initiative by using his life experience to encourage people to become organ donors.  I really have to hand it him: he’s really striving to make a difference, in spite of waiting for a new heart.  He could easily sit around and wallow, but he works hard to make the world a better place…and I really believe he’s going to achieve some great things!  Check out his video:

According to the Mayo Clinic, there are over 100,000 people in the US awaiting an organ donation.  That’s an insanely high number, and sadly many do not get the call that they will be receiving an organ and that’s a real tragedy.  I’m an organ donor.  Are you?  If so, great job!  If not, why not?  There’s a lot of myths surrounding organ donation.  Some people think doctors won’t work as hard on you if you’re in an emergency once they find out you’re a donor.  This is completely untrue: doctors will do everything they can to save your life, just ask any physician.  Some people worry they can’t have an open-casket funeral if they donate organs, but this also isn’t the case as there will be no visible signs of donation.  You can read more myths about organ donation here: http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/organ-donation/art-20047529  And no, if you choose to be a donor, no one is gonna grab you in your sleep and remove an organ.  C’mon son.

For heart parents, this subject matter is difficult but crucial for us heart families.  The reality is that some HLHS kids – like Jacob – will need a heart transplant even if the three surgeries are successful.  Obviously I hope Nolan doesn’t need to go through this, but IF he does….then I hope someone chose to be a donor so that there is a higher chance of a heart being available.  There are way too many kids – and adults – dying because they’re awaiting hearts and other organs.  I implore you to please become an organ donor.  PLEASE.  Check out Jacob’s website http://www.swellhearts.org/ and read his story and then consider being a donor.  You can save lives long after you leave this earth.  Somewhere right now I bet there is a boy about Nolan’s age who is struggling to cling to life and his parents are hoping and praying for a heart to become available.  What if that was your child?  If it was your child, I bet you would want everyone you know to be a donor.  So encourage your friends to be donors, then encourage them to encourage their friends to be donors.  Let’s make this thing grow…for Jacob, and for all the 100,000 others like him who are awaiting life-saving help.

It was really a pleasure getting to know Jacob during this trip.  We had a few adventures like a late-night cold walk to the White House and taking the Metro to the airport in rush hour.  I’m glad I got to meet him…he’s doing extraordinary things and I wish the very best for the Swell Hearts Foundation and above all, I hope and pray that he gets the phone call about his new heart very soon.  There’s so much left to fight for!

The HLHS Dad Goes to Washington (Part 2)

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

I must note that Congresswoman Adams was wearing a really cool hat…and apparently she’s well known for her hats.  She even had a book on her coffee table that was all about women in church hats.  So awesome.

Congressman Robert Pittenger

Up next we traveled through the Cannon Office Building (which had a cool dome) to Congressman Robert Pittenger’s Office:

Mr. Pittenger represents the 9th District of NC and if I lived just 2 miles down the road, he would be my Congressman.  I have a funny – and totally random – memory involved with Mr. Pittenger.  When he was running for office, he was in one of my town’s parades (maybe 4th of July?).  Hudson and I were there and happened to both be wearing Yankees shirts.  As Mr. Pittenger’s car drove by, he turned to us, pointed, and said “Go Yankees!”  He knows the way to my heart.  Anyways, we weren’t there to talk baseball, we were there to talk bidness.

We got there a little early but asked if they could see us.  Mr. Pittenger wasn’t available, so we met with Michelle, his Senior Legislative Assistant.  Much like we did with Ms. Adams, we shared our stories and our asks.  This meeting, however, was much more business-like and direct.  I’m not saying Michelle wasn’t nice, she was very nice, but I could tell it was a busy office and they had a lot going on so it was much more of a time crunch.  We learned Michelle is a Charlotte native and the office was decked out with Carolina Panthers stuff.  I noted to her that Greg Olsen from the team is also a CHD Dad.  Gotta spread that word (go get ’em, Greg).  I think it was still a successful meeting with a different feel from the first one.

So far two meetings down but no one’s been like “Well shoot, sign me up!”  Not that it’s a bad thing…better to think things through.

We had some time to kill before the next meeting so we made our way closer to the Senators’ offices and hung out in the cafeteria (no pics allowed in the cafeteria, apparently!).  Outside the building we met a guard whose name tag simply said “Big Dooky”…part of me was REALLY curious how he got that name…the other part of me didn’t wanna know.  On the way to the cafeteria we passed a gift shop, complete with a call of political power ties (hilarious), a sign for a hair salon, a buffet, and…mmm..a coffee shop.  But alas, I did not stop for coffee.  It was a good chance to stop for a breather and a drink of water.  We’d been on the go since very early that morning so a chill out break was in order.  After awhile we set out for our next visit.

Senator Thom Tillis

Senator Tillis is our newly-elected Senator so his staff was in a small, temporary office.  Upon entering I noticed two things: one of his staffers had a GINORMOUS Apple monitor (this thing was insane) and there was also a small conference room that had a big taxidermied possum hanging from a branch on the wall.  Randomest thing ever, and I’m glad we didn’t meet in there since it would’ve distracted me to no end.  Anyhow, our schedule indicated that Senator Tillis might join us for this meeting but that we were scheduled to meet with one of his assistants named Joe Nolan.  I mean come on…can’t get a better name than that.  In fact when I told my story he was like “Man that’s a perfect name!”  Anyways, Joe was very friendly and down-to-earth, I think we all felt really comfortable chatting with him.  And even though I’m sure – like everyone else – he was very busy, he actually made quite a bit of time to speak with us.  He listened to our stories and showed some real compassion for us and our kids.  You could really tell our stories impacted him.  He definitely wanted to pass along our stories and try to schedule some time at a later date for us to interact with a fellow staffer who dealt with healthcare matters.

This dude was really awesome, I think we all enjoyed our time with him.  Kind, compassionate…the world needs more Joe Nolans!

Now it was time for our group to split up since there were two meetings scheduled for the same time.  3 members of the group went to meet with Congresswoman Virginia Foxx and I went with another group member to see Congressman Richard Hudson.  So back to the Cannon building we went.  I was a little nervous about this meeting since we had a very experienced group member leading the way but now it was two newbies on the case.  I wanted to be sure to have an impact and not screw everything up.

Congressman Richard Hudson

This was the meeting I was waiting all day for: Congressman Richard Hudson represents NC’s 8th District, which is my district!  Represent!  He is also an alum of UNC Charlotte, just like me.  This meeting was very important to me because I wanted to make the biggest impact for my own district.  My schedule said I was meeting with one of his staffers, Curtis, so earlier that morning I emailed him to ask if Mr. Hudson was available for even just a quick photo op.  Curtis replied quickly and said he will do his best to make it happen.  We got to Mr. Hudson’s office and had a seat…and man that is a BUSY office.  They had people coming in from a gardening club, a group talking about rural water…people were coming in and out of that place like crazy.  Finally Curtis came out to greet us and take us back to his work area.  Honestly I felt much more relaxed in this meeting, possibly because it was just two of us meeting with Curtis.  After our introductions and stories, Curtis told us he has a really good friend who just had a baby with a CHD.  I could tell that as we told our stories and explained the need for more research, the wheels were turning in his head as this became much more real and understandable for him.  He took lots of notes and asked lots of great questions.  I asked if Mr. Hudson would please consider joining the Congressional Congenital Heart Caucus, since Levine Children’s Hospital – a PHENOMINAL heart center – is right in his backyard and it would be so powerful to have him supporting local heart programs and families.  Curtis asked a lot of questions about the hospital and I gave him my card to contact me and I can put him in touch with the right person to possibly arrange a visit for Mr. Hudson.  By this point in the day I was really comfortable speaking to our asks and whereas I was nervous before, now I was like:

I think we absolutely killed it at this meeting.  Curtis had several people waiting to meet with him, but he made them wait while he took the time to hear our story.  That meant so much to me, you have no idea.  The Congressman was still in a meeting so it looked like we wouldn’t get our photo op with him, but that was ok.  Curtis offered one better: he let me sit at the Congressman’s desk, complete with the UNCC jersey in the background (go Niners!):

Like. A. Boss.

On the way out, we saw Congressman Hudson in the hallway.  He was obviously really busy but took the time to say hello and asked me a couple quick questions about CHDs.  I gave him a quick 30-second rundown and told him the ever-so-awesome Curtis had all the info for him.  He took a photo with us using the office’s camera, so hopefully I can get a copy of that soon.  As soon as I do, I will post it.  Before I let the Congressman leave, though, I told him a story about when he first ran for office 2 years ago.  My oldest son, Hudson, would see signs everywhere that said “Hudson Congress” and he was excited to see his name everywhere.  So for kicks we got a sign for him and took a picture of him with it.  Fast forward two years and I’m showing the actual Congressman Hudson that sign.  He got a kick out of it.  He asked if Hudson still had the sign and I said yes, and he said “Wait here a minute.”  And then he went to his office and came back with a Hudson Congress hat for me to give to my Hudson.  Dude…AWESOME.

I was floating on air after that visit…I felt like I really made a difference and I really believe Curtis understood our message since CHDs are very close to his heart via his friend.  I have already reached out to him in the hopes we can continue the conversation and maybe even schedule a follow-up meeting whenever Congressman Hudson is in his local office.

Believe it or not, though, there was one meeting left!

Senator Richard Burr

Senator Burr has been in his role since 2005 and had a very fast-paced and busy office.  We met with Anna, one of his staffers whose specialty is healthcare policy.  We all told our stories and shared our big asks.  Anna spoke a lot about the future of healthcare and policy and what Senator Burr typically does and doesn’t do.  All in all, she was extremely knowledgeable and welcoming.  Much like the meeting with Mr. Pittenger’s office, though, this one was very much businesslike (again, that’s not bad) and to the point.  We didn’t even get a photo op, but that’s ok too.  To be honest, it was hard to top the wave of my previous meeting with Mr. Hudson.  And when I thought about it, I was suddenly really tired.  It was about 2:30pm and I was hungry and wiped out.  It had been a whirlwind day.

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After lunch I went back to the hotel to retrieve my bags, get some much-needed coffee, plug in my phone and fill out some reports on our meetings.  I had a blast talking with some other people who had some really positive meetings.  In all, I felt like we had a really successful day and were able to make a really big impact.  There were about 130 total advocates this trip and every voice mattered…with follow up and getting people involved, we can really continue to make a difference.

While everyone was going to gather up to share more experiences at 6, I needed to leave by 5 to get to the airport for my flight home.  I said my goodbyes, took the metro to the airport and eventually made it home by 9:30pm.  It was a great, whirlwind adventure and while I was exhausted, I was so glad I went.  What a fantastic experience!

What does it mean for you?

This Conference was an incredible experience…in the future you should try to participate if you can.  If you can’t, though, you can still make a difference.  Here’s how:

• Don’t forget your local government: Mayors, Governors, Representatives, etc.  Go get ’em!  Reach out to them and try to set up a meeting.  Let them know why it’s important for them to know about Congenital Heart Defects and their impact on our kids and families.  If you have a fantastic hospital in your area, encourage them to go visit and support that program.
• Share your story!  Write a blog, join an advisory council at your local hospital, be a part of a CHD support group.
• Learn more.  Look up CHD research, ask your child’s cardiologist about any important issues or studies related to CHDs.
• You can still reach out to your legislators in Washington.  Every one of them is on twitter and has their own website where you can send them an email.  I promise you, someone will read it.
• Remember that each voice is crucial to the chorus.  You may feel like your one voice doesn’t matter but that’s not true.  You are fighting for your son or daughter…NO ONE will deny you that and no one can deny the power of a parent who is fighting for their child, especially in the face of something deadly like CHDs.
• Never…Ever…Give up.  This is a marathon and I do believe we will make a difference: day by day, little by little.

The HLHS Dad Goes to Washington (Part 1)

As you may have read in a previous post, I had a very special opportunity to attend the Congenital Heart Legislative Conference in Washington DC on February 25-26.  I was really excited about the opportunity to speak with my legislators about CHDs and how funding research could really save lives!

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

 

I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

It’s very interesting to see that there’s some idea about the genetic causes of CHDs, but the truth is – and I’m sure we all know this – we just don’t know.  That’s why the NIH needs continued funding to study CHDs!

Next up was an equally-interesting presentation from the CDC that focused on CHD facts and their financial impacts on healthcare.  This really captured a lot of it:

$5.6 BILLION to care for CHD kids…and that was in 2009!  Imagine what it’s costing us now.  The CDC is currently trying to gather CHD across the life-span, so birth into adulthood, so we know what our kiddos can face growing up and we can allocate enough resources to continue helping them survive and thrive.  A big focus of this lobbying trip is increased funding for the CDC.  They are currently budgeted for $4 million to study CHDs, but the truth is they need $10 million to do it correctly and with the biggest impact.

With that, let’s take a look at the overall focus of the Legislative Conference:

For the rest of Day 1, we focused on learning these 3 issues, so we could ask our legislators to support them.  The first is to continue supporting NIH research for CHDs.  The second is that increased funding for the CDC to properly conduct its research.  The final point has to do with Department of Defense funding.  Currently the DoD has a pool of money that is given as grants towards peer-reviewed research.  A physician, for example, could petition this group and receive some money towards his or her research.  The great news is that CHDs are now on that list for the program!  This is really awesome because I know there’s lots of great work going on throughout the country, whether it be work in the interstage, 3D printing, etc.  We wanted to ask our legislators to help keep CHDs on the DoD list.

So those were our marching orders: go forth upon Capitol Hill and speak passionately with our legislators about CHD research!  We may only get 30 seconds to speak, we might get 15 minutes…we might meet with the legislator, we might meet with his or her assistant.  Either way, whatever opportunity we would get would be a powerful one…because our stories cannot be denied…and neither can our passion.  But that would wait for Day 2.

Day 1 was in the books and was a whirlwind day full of travel and education.  It was great meeting new people and I was so glad I came on this trip.  We all hoped to make a big impact, and who knows…maybe one day soon our story will make its way here: