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So as you know by now, Nolan is scheduled for his next heart surgery – called the Fontan Procedure – on Monday, June 6th. So what is the Fontan Procedure? Before we get into the specifics let’s step back a little bit and have a little review on the difference between a healthy heart and an HLHS heart:
So now let’s talk a bit about Nolan’s second heart surgery, which was called the Glenn Procedure. In this surgery the superior vena cava – the vein that routes blood from the upper part of the body – is connected to the pulmonary artery. This helps with blood flow to the lungs. So currently as of writing this entry, his heart looks something like this:
This next – and hopefully final – surgery is going to look like a reverse (or flipped) version of the previous surgery. In the Fontan Procedure, the vein that routes blood from the lower part of the body is connected to the pulmonary artery. The vein won’t quite reach, so a conduit will be used to make the connections. At times, surgeons will add a fenestration to the Fontan, which I’ve seen sometimes called a “blowhole”. It will allow a pop-off if pressures get a little high. In Nolan’s case, adding a fenestration will be a decision made by the surgeon at the time of surgery. Once the surgery is complete, his heart will look like this:
The lungs will now have a passive system of blood flow, which will move on its own and Nolan’s single ventricle can work on pumping blood to the body. Why is this important? Basically he has half a heart doing double the work. As you can imagine, this is a lot of pressure on a tiny heart and the Glenn and Fontan Procedures will alleviate some of the work on his heart, which will allow him to grow and remain active.
As far as complications go, there’s your usual: infection, bleeding, etc. This are par for the course. Nolan will have 3 chest tubes in, but hopefully he will drain well and can get those out as quickly as possible because from what I understand they’re quite uncomfortable. Recovery for the Fontan Procedure – if all goes well – is about a week. But: there is something that will delay that recovery, and that’s our good friend pleural effusions, which basically means fluid build-up around the lungs. This can be peed off or drain via the chest tubes. If the fluid exists, we just have to wait it out until it’s gone. If you can recall, Nolan’s Glenn recovery was only 5 days, but he still had fluid buildup so he was back in the hospital for a whole…seven…days. So this time around we’re gonna keep a close eye on it!
Of course, with any surgery, this is a very serious procedure. We’re putting his life in the hands of an amazing team at Levine Children’s Hospital and we’re confident they’re going to do an awesome job! As always, we appreciate the prayers and kind thoughts!
When we found out Nolan was going to be born with HLHS, our world seemed like it was spinning out of control – and I’m sure you can relate. There comes a point where you sit down and think hard about how to get the best care for your little one and give them the best shot at life. Where are the best hospitals? Who has the best surgeon? Who has the highest survival rates? I see these questions asked all the time in social media, and it’s a legitimate question for a lot of people. For us, we were fortunate to have Levine Children’s Hospital in our back yard and from what I heard, they did a really good job. Prior to that, though, I knew this place existed, but didn’t know much else about it.
But here’s the facts, friends…you and I, we can go almost anywhere for care. Hop on a plane and fly to Boston or Philadelphia or make the drive down to Atlanta. But nearly 4 years after stepping foot in that hospital for the first time, I want to let Levine Children’s Hospital know that I will always choose them.
I choose you, LCH, because of your nurses. The men and women who fought to ensure Nolan recovered from his Norwood procedure, no matter how many weeks it took. The same ones who patiently answered the same questions over and over and over again. The same ones who took the time to ask how our other kids were doing. The same one who made my oldest son a card from Nolan when I mentioned he hadn’t had a chance to meet him yet. Nurses, you’re the ones who have guided us through this crazy process, you showed us where to find that chocolate milk in the nourishment room (yum) and you quietly shut off the lights in Nolan’s room when I fell asleep in my chair from exhaustion. I choose you because you don’t just do your jobs by the book: you do them with compassion and human connection. To you it’s not just enough for Nolan to survive, but he also needs to thrive.
I choose you, LCH, because your hospital is a wonderful place to be – even if that’s not where you want to be. The bright colors, the bacon chairs, the radio station in the lobby, the smiling faces: those are the things that I will never forget. Not to mention you strive year after year to be the very best around: you recruit amazing people who do life-saving work each and every day. I choose you because of your Child Life team, who brought Nolan a mobile to look at once he was able to open his eyes. Or the volunteers to came by with a cart of toiletries when I forgot my deodorant at home and didn’t want to smell like a 3-day old bowl of chicken noodle soup.
Even though you’re close to home, I choose you – Levine Children’s Hospital – because every time I walk through those sliding doors at the front of your hospital, we are treated like family. And when it comes down to my son’s care, I choose family.
So to the nurses at Levine Children’s Hospital, I want to wish you a very Happy Nurse’s Week! And to everyone else, have a Happy National Hospital Week as well! I know that every time I see Nolan smile, breathe, jump, laugh, and play, it’s because of you and the tremendous, sacred, life-giving work you do each and every day, without fail. From the bottom of my heart, I thank you!
Hey everyone! I just wanted to post an update on how Nolan’s cardiac cath procedure went. Overall it went well, but let’s start from the beginning:
We had to be at Levine Children’s Hospital at 6am so we were up super early so we could load up and make the drive. Nolan woke up in a super happy mood and was – believe it or not – excited to see the doctor and “get pictures of my heart.” Oh, and Nolan was definitely stylin’ for the occasion:
As you can see he was in great spirits even arriving at the hospital: saying hello to everyone and being in a good mood in his ninja turtle robe (with his Monkey in tow, of course). We went up to pre-op, checked in, and were guided back by a nurse who took his weight. Everything was going smoothly until Nolan’s arch-nemesis arrived: THE BLOOD PRESSURE CUFF. Once that went on it was a wrap…kid was duzo and we were on a trip to screamsville, population Nolan. From that point whenever anyone came into his room wearing scrubs or looking even halfway official, he’d flip out. Yeesh. It was gonna be a long day. The crazier part was we got there at 6 and the cath was scheduled for like 8:30. So we had quite some time to deal with our crankypants. We watched some shows on his tablet, then on the TV, then I resorted to walking him around the pre-op unit. And oh no, King Nolan didn’t want to ride in the wagon they had, he wanted Daddy to carry him. So at the expense of my arms we did like 48261947265284 laps around the unit. Eventually the nurse arrived with the magic stuff: Versed. It’s a sedative they give kids before taking them back, and it’s gooood stuff, from the looks of it. We put it though his g-tube and convinced Nolan to ride in the wagon, which he agreed to…but not after tucking in Monkey first:
A few more laps around the unit and the happy juice was kicking in. Nolan was smiling, laughing, and tipping over like a little drunk. We got him into his bed and told him he was going for a drive. From there he was wheeled back to the cath and my wife and I went up to the waiting room, where we ate breakfast, watched crappy TV shows, and dozed off.
Finally about 3 and a half hours or so later we got a call from the doctor who said the cath was complete and they had to balloon open part of his Glenn shunt as well as part of his pulmonary artery, which he said he sees a lot in HLHS kids. He assured me all was fine but that due to the ballooning Nolan would have to kept overnight. Sheesh. Oh, and due to the ballooning it would postpone his surgery for at least 6 weeks. Not such a big deal, except that we had several people lined up to help us that week…time to change plans!
We finally went to see our little boy and he was so sad. He was just coming out of it and was cranky and crying out for us. He wanted water too. His nurse was really attentive and let my wife get in the bed with him. Eventually we went up to the progressive care unit, which is where we’ve been a ton. By now Nolan was a beast: he was very unhappy and just wanted to go home and nothing was going to make him happy.
Eventually my wife had to leave to get our other kids and I had hospital duty for the night. Eventually I got our little crankypants to fall asleep:
And it was glorious. He slept for several hours and no one bothered us (bonus!). Having a toddler in the hospital is WAY different than a baby: you can’t seem to walk away for even a second, so I asked a volunteer to sit with him while he slept so I can run to the cafeteria to grab dinner. When I got back he was still asleep, which was great.
Once he woke up I took him for a walk on the unit now that he had clearance to do so. He walked for a little bit but eventually wanted to be carried. I wasn’t gonna argue with him. Eventually I got the little nugget to go back to sleep and I prepared myself for a night of maybe-sleep on the long couch in the room.
The next morning I startled awake at 7:30 and Nolan was still knocked out. I realized I slept good too: no 2am interruptions? No 4am blood draw? YES! That only lasted so long, though, as Nolan needed an EKG an x-Ray and some blood work before he was sent home. He was NOT happy to wake up to the EKG but he did good:
When the phlebotomist came I was ready for battle. If you’ve read this blog you know how I can be with phlebotomist a sometimes (no offense). The good news was Nolan already had an IV line so I asked for his blood to be drawn from there. She told me she couldn’t do that, which I expected, so I asked her to get the nurse. The nurse got the blood from the line without needing to stick Nolan. Win!
Mommy came next with breakfast, which made everyone happy. Then Nolan got a visit from a very special. Guest: a therapy dog named Coco. And he LOVED her:
He came home a little sore and bruised but otherwise fine. We’ll schedule an appointment with his cardiologist to talk surgery. For now we’re glad he’s home. Thanks to everyone for the kind thoughts and prayers! We were truly feeling the love!
I apologize for the lack of updates lately: it’s been super busy! I did want to come here and give my readers an update on Nolan as we begin preparations for his third – and hopefully final – surgery, the Fontan Procedure. First, however, he will need to get a Cardiac Catheterization procedure, just like he did before the Glenn Procedure.
So you might be asking: what the heck is a cardiac cath? Or maybe you’ve got one coming up for your kiddo and you want to learn more. Well here’s a little bit of information:
A heart cath is essentially a procedure to look more closely at a heart’s function, even better than an echo. Your kiddo will be sedated and possibly put under anesthesia. Doctors will insert a catheter, which is a thin tube, into a blood vessel in the leg, groin, arm, or neck (Nolan’s cath will have at least leg and neck due to the Glenn shunt).
Using the catheter the doctor will be able to get a really good look at your child’s heart structure. He or she will also use the catheter to test the pressures in the heart and check blood flow through the heart.
Depending on your child’s CHD and the condition of his or her heart, the doctor can also use this opportunity for treatments or repairs. They can place stents to keep arteries open, use a balloon to open valves or blood vessels, and even close off certain parts.
Typically kids stay in the hospital for monitoring until their O2 levels return to normal: sometimes this can require an overnight stay. I’ve been told it’s rare for kids to have major complications from a cath procedure. The only things to look out for is discomfort around the entry point(s) and making sure to keep bandages on as long as instructed. Of course, be sure to follow all the doctor’s instructions.
Tomorrow morning, March 15th at 6am we will bring him to Levine Children’s Hospital and he will be in the hands of an amazing cardiac cath team. This is our second time bringing in Nolan for a cath and while this procedure isn’t as major as a full-blown surgery, it nonetheless has me nervous. You know I never want my little man to be uncomfortable or scared, so he’ll be receiving lots of love and snuggles! As always, we really appreciate all your prayers, kind thoughts, and positive vibes! If you want to get more real-time updates on Nolan and his cath, please be sure to visit his Facebook page…and click like too! Thank you all!!!
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!
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!
This may start off as pretty off-topic, but trust me I will try to tie it all together. The other day I checked out the movie Gattaca on Netflix:
I’m not going to completely spoil the plot of this movie, for those of you who haven’t seen it yet, but the general idea of the movie is what I’d like to discuss. The movie occurs in the “not-too-distant-future”, where people are able to have improved, nearly perfect children through genetic manipulation at the time of inception. This means they could pick their child’s gender, eye color, hair color, etc. And they will even remove traits that cause anger, violence, etc. These children grow up to be highly-regarded in society and are called “Valids”. They get the really good jobs.
Then there are children who are conceived naturally, without any genetic manipulation. They’re called “In-Valids” and are relegated to menial jobs. There’s a scene where an “in-valid” baby is born and a nurse prints and reads off a list of probabilities that the baby will have something wrong…on it was something like “ADD, 50%….heart disease 91%…estimated life span 30.2 years…”
The parents of the natural child regret their decision and use genetic manipulation for their next child. They constantly remind the oldest son of his possible flaws, pointing out that his heart can’t handle things, even though there was no proof of a heart condition with him. Valids have high-status jobs, but are always subject to urine and blood testing to ensure they’re genetically superior, and they are who they say they are.
And I’ll stop there…you should watch the movie, it’s a good one.
My real point in discussing Gattaca is this idea of having the “perfect baby.” I remember attending a conference last year where one of the speakers was discussing the future of healthcare technology. She talked about physician holograms, mobile vitals collection, etc. But she also talked about the way future and the idea of “Designer Babies.” In essence, the same thing as Gattaca, and that the major issue for employers is how to balance the workplace when you have employees who are modified to be stronger, faster, smarter, etc., verses those who were born with basically the luck of the draw.
I’m sure the thought of having a 100% healthy baby appeals to pretty much everyone, right? I mean there’s a chance you’re on this blog because you’re experience is the opposite of that. The big question for me is this: let’s say we had this technology in place and we were able to have two completely healthy babies. What would that look like for me? No clue. Would it be easier? Yes. But I’ve said it a million times that I’ve been learning to turn this CHD thing into a meaningful thing. If everything was smooth sailing, would I be content with mindlessly coasting through life? Or would something else come up to give it meaning? Oh the crazy, crazy questions. What are your thoughts? Will we ever get to the world of “Designer Babies?” And will it spell the end for CHDs and other birth defects? Would we benefit from a “perfect” world?
The next thing that got me thinking is that if this technology suddenly comes to fruition in the very near future, that Nolan – and all my boys – would eventually have to compete in a world with genetically enhanced people. I’d hate to think my child would be marginalized merely because of his heart. Sometimes it’s our flaws that make us interesting, it’s our scars that share our stories.
My wife and I wanted 2 kids, max. We already had one, Hudson, who was 2 years old when Bekah’s home pregnancy test had the lovely plus sign. June 5th was the day after her birthday and she had an appointment with her doc. Since I started a new job, I didn’t think I’d get the time off to go, not to mention that I had to be at a Leadership Retreat that particular day. I do have to preface this story by saying that I don’t do well during the pregnancy experience: I freak out and get really nervous when it comes to doctors appointments. You hear all the time about bad news and I just didn’t know what I’d do if I got bad news at any of these appointments.
So you can imagine my terror when my wife texted me in the middle of one of my meetings and it simply said “Call me.” I excused myself and nervously dialed her number. She answered with a fairly happy tone: “Hey babe!” And then…I knew. I KNEW. TWINS. It had to be. And then she confirmed it…twins. And then my mind went NUTS. Are they sure? Twins. TWINS?! What?
After a short chat I returned to my seat in my meeting and was in a fog all day. I couldn’t stop thinking about things like how we’re supposed to afford twins, how we’ll never sleep again, how we’re supposed to fit them in our cars, etc. But I came home and Bekah showed me their little ultrasound, and in spite of all the worries, the only thing I said was, “I love them.”