Well everyone, it’s finally Fontan time. Earlier today we took Nolan for his scheduled pre-op appointment. We dressed him in his own green surgical scrubs and doctor kit and he was looking majorly adorable:
As you can imagine, Nolan doesn’t do the best with doctor’s appointments anymore. I mean he’s super happy to go to the office and super happy to see everyone, but the minute they slap a blood pressure cuff on him, he is DONE. And an EKG? Forget it. So we tried to talk up the appointment as much as possible: I had him squeeze my arm like a bp cuff, packed stickers that he can put on me while getting his EKG stickers put on. Even our oldest son came along to help and be a good big brother.
The staff at Levine Children’s Hospital- as always – was awesome. They decided not to do the EKG until surgery day when he got his versed and was calm. So they let him play, did a nose swab for MRSA, and had us sign a bunch of papers. I went with him for his chest x-Ray and he did awesome. He didn’t fuss and thought it was fun. Then came time for the biggie: blood work. We sang the ABCs over and over again and the phlebotomist got it on the first shot! And Nolan didn’t cry or fuss once! That lady was a total boss!
So tomorrow, June 16th we’ll get to the hospital at 7am for Nolan’s scheduled Fontan procedure. We’re as ready as we’ll ever be. We appreciate all the thoughts and prayers: thanks so much to all of you for your emails and comments. They’re always much loved!
If you want to keep up on Nolan’s updates over the next several days, please like and follow his Facebook page: http://www.facebook.com/SupportTeamNolan
So as you know from reading this blog, Nolan was scheduled for his Fontan Procedure on Monday, June 6th. Weeeell…so much for that. Turns out Nolan had a small (thank God) bout of the poops which gave him a bit of diaper rash. And that, my friends, led to the next installment of “let’s postpone the Fontan.” When I got the official cancellation, at first I was like:
So it goes. It’s alright though: the nursing team said that even a diaper rash can cause dangerous issues if they need to put a line anywhere near his groin area. They said it’s a risk they never take. And I can definitely appreciate that.
The hard part is the lead-up to the surgery and all the preparation, only to hit the brakes. Now we have a little time: Nolan’s new surgery date – God willing – is Thursday, June 16th. Until then we can hope he stays healthy!
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!
We knew the Fontan was coming. We knew it was coming from day one but it seemed so far, far away. A successful Glenn Procedure gave us some room to breathe, to create memories, to move on a little bit. But here we are…Nolan’s Fontan Procedure was originally scheduled for late March, but since they had to do some ballooning during his cath, that date was postponed. Since Nolan didn’t need to have the surgery immediately, we chose to wait until school was out for all the kiddos. On May 5th we sat down with his surgeon, Dr. Maxey, to finally talk about the Fontan.
But before we get into the meeting, a little background. When we started this journey with Nolan, we were introduced to his surgical team: Dr. Maxey and Dr. Peeler, who was the Chief Pediatric Heart Surgeon. Last year Dr. Peeler announced he was leaving his position for a similar one at another hospital. Of course, this was a shock to everyone. Eventually, though, Levine Children’s Hospital hired Dr. Paul Kirshbom from Yale. Really awesome guy: I was lucky to meet him a few weeks ago. I know he’s going to take this program to great places. Some parents, understandably, were very nervous about Dr. Peeler leaving. What about us?
Dr. Peeler did a fantastic job on Nolan’s Norwood Procedure (with Dr. Maxey), but if you recall from this blog you’ll know that Dr. Peeler wasn’t available to do Nolan’s Glenn Procedure and it was done by Dr. Maxey, so we had some experience with Dr. Maxey getting the job done in awesome fashion. So for me, having Dr. Maxey do Nolan’s Fontan Procedure didn’t make me so nervous. I mean, I’m still nervous…but you get my drift.
So anyway, here we were sitting down with Dr. Maxey talking about our little man. He walked through what the surgery would entail (I’ll post details about it soon), and laid out all the facts for us. He said Nolan is a great candidate for his Fontan and he feels very confident about it. So if he’s confident, then I need to be confident: in him, his team, the nurses, the CNAs, the housekeepers, the food service people, etc. It’s a total package. If they’ve got my son’s back, then I’ve got theirs. Before we left we had Nolan scheduled for his Fontan Procedure on Monday, June 6th.
Don’t get me wrong, though, this is still stressful, heavy stuff. For some reason, I feel much better about a June surgery date than the late March one. I can’t explain why, but that date was totally freaking me out. Many of you read this blog because it is helping you along the journey: I’ve been happy to share our experiences with Nolan through his Norwood and Glenn. But this is new territory: this is an unknown and honestly I’m not sure if we’re ready for it. There’s no way. We’ll be bringing our son – now a toddler – in for another surgery. There will be fear, pain, and tears. And I wish, as I do very often, that he didn’t have to go through this. Or that he would wake up tomorrow with a whole heart. Sigh.
But this is real, and this is happening…and dates on the calendar keep moving along, and there’s nothing I can do to stop it. In the meantime we hope, we pray, we laugh, we have fun, we continue to make memories. I sing the ABCs with Nolan (sometimes non-stop), I tickle his neck, I encourage him to dance to fun music, and I keep telling him how awesome he is and how much I love him. As June 6th rapidly approaches, we would appreciate everyone’s prayers and kind thoughts! Thanks for being awesome, readers, because of you I know we have friends around the world and we can do this with your help!
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 Heart Moms! I’m going to make this post brief, just in case you’re reading this from your phone while you’re hiding from your kids in the bathroom.
I kid, I kid.
Seriously, though, I wanted to take a moment on this blog to wish a very happy Mother’s Day to all the Heart Moms out there! You were handed a life you could have never planned for, not in a million years. While other moms-to-be were having elaborate gender-reveal parties, you’d lay awake at night trying to get that ultrasound image out of your head. While other new moms were figuring out how to install a snap-and-go car seat, you were doing your first 2-minute hand wash prior to your first NICU visit. While new moms came home to a beautifully done baby nursery, you did your best to make a Ronald McDonald House feel like home.
Yet you’re still here…still fighting. With every step down the CVICU hallway, hearing the familiar beeps and dings, you’d get stronger and stronger. Now you’ve got purpose, something to fight for…someone to fight for. You’ve learned to surf when the waves come. You’ve helped keep the germs at bay and taught a growing girl or boy that a big scar down their chest doesn’t make them super strange, it makes them a super hero. You carried our heart kids all while bearing the weight of the stress and the fear…the way I see it, you passed on your toughness to them.
Thank you for everything you do. There will be days when you’re knocked down…don’t ever stop getting back up again. There isn’t much else in this world tougher than a Heart Mom! So look back on all those things you’ve been through and give yourself a little bit of grace and tell yourself that you did good. Rest in that for a little while. Don’t let anyone tell you how you should do you. Maybe there’s other moms out there who looked like they just walked out of Pinterest, but can they say “pleural effusions” five times fast? I rest my case.
I hope all the moms out there have an amazing Mother’s Day!
And last, but certainly not least I wanted to give a very special shout-out to my wife Rebekah. You are an amazing mom! I remember before we had any kids we jokingly asked each other “Who in the world has three kids?!” And now look! You juggle so much and do it all with grace and kindness: the very same kindness that you instill in our kids every day. They’re going to grow up to be amazing young men because they had you as a mom. Love you❤
Aside from this blog, I really enjoy sharing my story with others. Over the last couple years I’ve been able to speak to other heart parents and healthcare workers about my journey with Nolan. I love helping people know they’re not alone or open others’ eyes to congenital heart defects. Recently I had a chance to take my story a little more “mainstream”. There’s an amazing program for creatives here in Charlotte called CreativeMornings/Charlotte. They set up free monthly speaking engagements where they bring in speakers to inspire others with their stories. It’s really awesome stuff. A couple weeks ago, CreativeMornings/Charlotte was holding an event during a local weekend art showcase called BOOM Charlotte. For this “Audience Takes the Stage” event, 6 people were chosen to speak for about 7 minutes on the subject of risk. I was really excited to be chosen as one of those people! So in the morning we gathered in the Plaza-Midwood neighborhood here in Charlotte and we all told our stories to an audience who mostly never met us before:
It was a really great time! I got to hear stories of hope, dedication, and perseverance…all tied to risk. I enjoyed my time up there on stage…but 7 minutes FLIES by! I talked about how my journey with Nolan inspired me to write this blog, because discovering your child has a CHD is like stepping into the unknown, and I wanted to help others as they make that same journey. That’s a lot to pack into 7 minutes. So now that I have no time limit, I want to share with you some of the things I spoke about and how they can apply to you as a heart parent. You see, it’s not easy to share your story…but if we can do so, we should. The reward is greater than the risk and you can change the course of your life, the lives of others, and even the future of CHD research. So check it out:
The Risk of Being Vulnerable
This was one of the big risks when it came to writing this blog. There wasn’t a lot out there at the time for heart dads by heart dads. But the bigger thing was not just telling a story, it was being open and honest about it. Talking about the times I was scared, upset, frustrated…even talking about tearful moments. Last time I checked, most guys aren’t signing up to talk about that kind of stuff. So I choose to open up as best I can about it and it’s not easy…many times I’d prefer to tell highlights of the story. Being vulnerable is a big risk because there’s a chance – believe it or not – that you reading this might think that I don’t have things together at all. And – spoiler alert – I don’t have it all together. No one’s perfect and life is a process! When you choose to share your heart journey with others, you’re also making yourself vulnerable…but if you take the risk, it will pay off!
The Risk of Facing the Past
Being a heart parent is like climbing a very steep mountain. You work very hard just to move forward and hopefully leave all that old mess behind. When you choose to share your story with others, whether personally or through something like advocacy, it causes you to turn around and face those things you’ve put behind you. The surgeries, the recovery, the hospital smells and sounds. All of it. And if you’ve done it, you know that sometimes it really hurts…like re-opening an old wound. Sometimes we don’t want to talk about it, and I understand that feeling. But when you choose to do that, I gotta tell you: not only do you help others, but you start to heal yourself in the process.
Why the Risk is Worth It
I know that life sometimes feels like an ocean bashing you up against the rocks, but one day you’ll climb up out of the water and onto those same rocks. And you can choose to walk away or withdraw or you can choose to be a lighthouse for others. I hope you choose to use your story to be a light. Tell your story. Whether you help one or help a hundred, it’s always worth it in the end. Is it easy? Not at all. But you can be a fire and every fire starts with a match and every match is lit by friction. So how do you get involved?
· Write a blog!
· Advocate for CHD research! Visit PCHA to learn more.
· Join the tons of CHD facebook groups and talk with others. They need you!
Sharing your story is like stepping into the great unknown…it can be scary sometimes…but remember when you started this journey? You were stepping into the unknown, too, and now you can guide others who are now in the same place.
To learn more about CreativeMornings/Charlotte, visit Charlotte is Creative
So before you say anything, I realize I am WAY late on this post. Better late than never, right? It occurred to me that I never posted any kind of recap on what I was up to for CHD Awareness Week, which – if you remember – was waaaay back in February. So here’s some background:
I wanted to do something that raised CHD Awareness but also gave back to the community. Sometimes that’s a really difficult thing to do. A couple years ago I did 32 acts of kindness for my 32nd birthday and it was amazing, but it also talk almost all of 4 days to complete and I needed something that could be accomplished in one day but was still impactful. The problem was, I couldn’t think of a single thing. I loved the idea of acts of kindness but how to freshen it up for 2016? Then the answer came…a heart. But not just any ol’ heart: a heart that gave back and raised awareness. You see, the plan for this year was to do 10 acts of kindness in my area in 10 specific locations…and when it was all said and done and all those locations were mapped out, it would look like this:
At each location I would leave behind information about Congenital Heart Defects. So after coming up with a plan and coming up with all my stops, it was time to kick it off on the morning of February 10th, which was right in the middle of CHD Awareness Week.
Stop #1: Nolan’s preschool
The first stop was to Nolan’s school: we wanted to bring some heart balloons and treats to his teachers to show them how much they really mean to us.
There are not a lot of preschools lining up to take a kid with a heart defect AND a feeding tube. But they graciously took Nolan once they saw he so desperately wanted to be with his twin brother in school. And it’s been so great for him: he has learned a lot and his teacher is the BEST. The visit went nicely and I think Nolan enjoyed giving out the balloons and CHD awareness info. And then we were off to the next stop!
Stop #2: Mint Hill Public Library
This stop was a lot of fun because we made some really cool sun catchers out of red and blue beads (CHD Awareness colors) to bring to the library so they can be displayed in their front window.
We also donated a few books, including “My Brother Needs an Operation,” which is a CHD book that was donated by the super awesome Baby Hearts Press (please visit them here, and buy like 10 books!). Nolan loves books and was excited to bring some to their staff. Wanna know something wild? So while I was planning this particular stop, I was emailing the manager of the branch, who was very helpful but wasn’t there yet when we arrived. When I followed up with an email thanking him, he told me he also had heart surgeries in his youth, “with the scar to prove it.” How awesome is that? It’s amazing the connections you find out there!
Stop #3: Robinson Presbyterian Church
So we were doing well on time (I was trying to keep on a schedule) and everything was going quite smoothly. This stop, though, was one I was really unfamiliar with and ended up being one of the most touching. You see, when I came up with this plan of a heart-shaped map, I drew the heart first around the city then worked on figuring out what fell along that route. Sometimes that was easy, sometimes it wasn’t. In this case, my Google maps search found this church in Charlotte. I’ve never been there and to be honest I can’t recall ever even passing by it before. But I found out that they had a ministry called Room at the Inn, where during the colder months they bring the homeless in and give them a warm meal and a warm place to sleep before loading them up with more food and some toiletries. I offered to collect some toiletries for their program, which they were happy about. I collected these by hosting a pizza party at our house and having attendees bring some toiletries to be donated. So we ate good and we did good: thanks all my friends and neighbors!
Anyways, while I was arranging this drop-off, the guy on the phone told me no one would be in the church office, but the lady who ran the church preschool would be there and to drop off the items with her. No problemo. When I arrived at the church, I was also greeted by a reporter from our local NBC affiliate, WCNC. He was really awesome and wanted to share our story and follow me around a little bit. Nolan thought that was awesome. I walked up to the preschool door and rang the bell: holding a big bag of toiletries, a toddler, and being followed by a cameraman. This was gonna freaking this lady out, I was sure of it. But when I explained to her what I was doing, she was overcome with emotion. Apparently she was just told “Some guy is dropping stuff off for the homeless” but she got no other info. Turns out a very good friend of hers in another state had a child very recently who was born with a CHD and just went through their first heart surgery. I totally didn’t expect this. We chatted for a bit and she got to see Nolan and how well he’s doing. At the end I gave her a big hug and thanked her, and she instead thanked me…she told me it was the best part of her week. I can’t express how touching this was…and how clear it is that CHDs affect us all!
At this point I said goodbye to my wife and Nolan so they could head back home and get out of the cold. Off I went with the cameraman to more stops!
Stop #4: Center for Community Transitions
This is another group I had heard of before but didn’t know much about. When I looked them up online I found that they’re a program to help those with criminal records and their families turn their lives around. A big part of the work they do revolves around schoolwork and tutoring for kids whose parents might be in prison or just getting out. For this program they needed school supplies and I was more than happy to help. So I brought a couple bags of supplies to the Director and Volunteer Coordinator:
They were so thankful for the items and I told them this, and I will forever believe it: I hope that those supplies can lead to a child somewhere in our community being VERY successful in school…and I hope that kid grows up, goes to med school, and finds the cure to CHDs. Wouldn’t that be amazing?! It sounds corny, but I truly hope and believe! To find out more about the amazing work of this group, click here.
Stop #5: Urban Ministry Center
This was my final stop with the cameraman and he was a lot of fun to hang with. Urban Ministry Center is an amazing program that seeks to end homelessness in the Charlotte community by helping the needy find homes, providing food, helping with access to healthcare, and providing laundry and shower services.
This day in particular was pretty freezing, even for Charlotte, so as you can imagine the line to get in this place was super long. My job for the hour was to work in the mail center, which I found interesting. They allow the homeless to use their location for a residential address, so they can apply for jobs, receive important mail, and even apply for a free government cell phone so they can call about jobs and schedule interviews. That’s pretty awesome and I never thought about how much power was tied to having an address. So I hung out there behind the desk and whenever a neighbor would come asking about his or her mail, I’d check their ID and see if there was anything waiting for them. Some people didn’t have anything and they were cool with that…some people had stacks of stuff…some people were upset because they were waiting on something. Nothing too out of the ordinary, though, and I really enjoyed my time there. There were SO many people waiting for a hot meal and for other services…it really made me focus on just how good I’ve got it in my life, even on my absolute worst day. I still have a place to sleep, food to eat, and clean clothes. We take so much for granted. To learn more about Urban Ministry Center, click here.
Stop #6: Levine Children’s Hospital
You know there wasn’t any way I was doing all this and not giving back to the place that saved Nolan’s life, right? I always love going back to visit our “family” in the CVICU. As a visitor, of course. I brought the CVICU staff some more of those sun catchers as well as the heart balloons. But the big part of my visit was to present them with a very special book. In the days leading up to this, I reached out to heart families in our area whose kids were treated in that particular CVICU. I asked for stories, notes, and photos to be included in this book of thanks. The goal was for the book to be kept on the unit so that whenever the staff was having a hard day or was feeling down, they could flip through the pages and see the proof of their hard work and the many lives that were saved. It made me so happy to share this with the staff and I could tell they were genuinely touched by it. We wanted to provide something with real meaning for these folks, and I think we did well.
It’s always crazy to be back on that unit and hear those familiar sounds. I told them Nolan and I would be back soon…but not for long. And that hopefully we’d never have to see them again (of course I meant that in the nicest way possible). Love you guys!
At this point I realized I was starving like a BEAST. So after getting some grub, I was off to the next stop. And I had to hurry because I was a little bit behind schedule now.
Stop #7: Police & Fire Training Academy
In a past life I used to work for the police department as a civilian employee and enjoyed my time there. One thing I realized was that police officers really like to eat good stuff. So I stopped at a local Panera and picked up a bunch of bagels to bring to the Police & Fire Training Academy for the staff and recruits. It was pretty fun to be back in this place, it’d been so long
The receptionist in the lobby was so friendly and we spent time talking about Nolan and his journey. She said she was so happy someone came to do something nice for their team and that it would go a long way. She said she’d share Nolan’s story with everyone and their thoughts would be with him. Can’t ask for better than that, right?
Stop #8: Someone’s About to Get Caffeinated!
So this is the point where the stops became quicker and I don’t have any more photos, but they were still fun. At this stop I pulled into the drive thru at Starbucks and ordered for myself and then paid for the person behind me, leaving behind some CHD info. The barista at the window read over the little card I gave him and he was like, “This is really cool…my daughter works at the ICU at Levine Children’s”. Small world, right?
Stop #9: Another Panera
This stop was kinda funny because I planned to buy someone’s lunch at Panera but didn’t exactly know how to execute the plan since when I got there I was the only person in line. Whoops. So I acted like I was pondering the menu…for a looooooong looooong time. Finally a man came in with his mom. That’s when I pounced: I ordered a gift card and then turned it around and handed it to the woman with the CHD info and said “Enjoy lunch: have a great day!” and left. She looked at me like I was NUTS. And yes, I am. I ended up getting a very nice email from that gentleman about a week or so later. It was really cool of him to reach out to me!
Stop #10: The Final Stop – Charlotte Pediatric Clinic
While Cardiologists get all the fame and the glory, I wanted to take some time on this day and recognize Nolan’s pediatrician, who is an amazing doctor…and an amazing human being. Seriously, Dr. Prosser makes sure that there’s always an extra nurse available to help when my wife visits and so she won’t have to wrestle all 3 kids during the whole visit. She’s super flexible and kind and makes us feel welcome and like we’re family. So we brought her and her staff some flowers and balloons and cupcakes. A very sweet ending to the day!
I was thankful for the opportunity to take a day off work and run around the city doing fun, nice things for people. It’s grounding for me to know that there’s so much need and so many great people doing hard work to meet those needs. Puts my struggles into perspective for sure. Plus I was able to spread the word about Congenital Heart Defects, and I know deep down inside that will make an impact too. What will CHD Awareness Week in 2017 hold? I have no idea, it’s too early for that. So in the meantime, please check out the WCNC story on my CHD Awareness Project: Charlotte Dad Honors Son.
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!!!