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Hey friends! This will be a brief post, but I just wanted to let all my readers know that on Tuesday, March 21st, Nolan will be going in to Levine Children’s Hospital for a scheduled cardiac catheterization. They’ll be taking a good look at his heart function, pressures, and how well his Fontan circuit is doing. Moreover they plan to do some things to help bring up his oxygen saturations, which have been just a little on the low side post-Fontan. We’re expecting to be there overnight, which is not unusual for Nolan. We appreciate any prayers, kind thoughts, good vibes, etc. I’ll post some updates here later on but if you want quicker updates, you can definitely visit Nolan’s facebook page.
The life of a Heart Parent is a rather insane one. I know you know this: isn’t it amazing how the most run-of-the-mill things become colossal when your heart kid is involved? Take this holiday season, for example.
We made the trek to Florida for a good 10 days to spend with my wife’s family. All the kids did surprisingly well on the drive (which we stretched over 2 days) and enjoyed their time with their grandparents, cousins, aunts, and uncles. The bulk of the time was spent in a condo right on the beach in Clearwater…it was pretty sweet:
The day after Christmas the whole family took a trip to Busch Gardens, and we weren’t completely sure what to expect. Let’s face it: the twins are still shrimps so I wasn’t sure how many rides they could get on. Plus it was really hot, which Nolan struggles with…and if Nolan isn’t happy…well…no one is, if you know what I mean. But Busch Gardens had a decent collection of rides in their Sesame Street-themed area and none of them provided any concern for the kids. I mean look how happy Nolan is here:
The big deal came two days later when our little family had the opportunity to go to LegoLand. Before I get into the story I wanted to give a little background about how we got to go to LegoLand. Merlin’s Magic Wand is a wonderful charity that gifts fun outings to kids with severe illnesses and disadvantages. They were gracious enough to provide our family of 5 with tickets to LegoLand and we gave it to the kids as a family gift on Christmas Day. They were super excited to get to go on more rides and I was excited at the prospect of a theme park that’s made for smaller kiddos.
Now I love amusement parks. Always have. I love roller coasters and all sorts of fun rides, so I was really looking forward to this special day with the family, and Nolan was definitely excited too:
They gave us a little pass to help us get on the rides quicker, they measured Nolan and gave him a wrist band so he wouldn’t have to be measured at every ride (he’s finally 36″! YAY!), and every single person who we ran into there was so kind to all of us. We got on some rides like the train and the merry go round and even this Lego Chima ride that got us SOAKED. There were smiles all around…this was gonna be an awesome day.
But then Nolan said it: “I wanna go on a roller coaster.” He had asked this several times already and we were able to successfully deflect it and re-direct, but this time he was insistent. The problem? He was too small for any of the roller coasters, not to mention I had no idea if a coaster was truly a good idea for him, if you know what I mean. It says it there when you get to the line: not for people with heart trouble. This was looking to get real frustrating, real fast.
But kudos to my wife, who is ever so awesome: she saw there was a ride nearby that could potentially serve as a “coaster” of sorts for Nolan. It was called Merlin’s Challenge:
You’ve been on something like it, I’m sure. You’re in a car, it spins round and round and goes up and down. Nothing too fancy, but the cars looked like trains and to Nolan it was a roller coaster…and I wasn’t gonna correct him. And the height requirement? 36 inches! BAM! So we waited in line and Nolan was super excited as we boarded. Hudson was big enough to ride in a car by himself. My wife went with Grant and I went with Nolan. I sat next to him asking if he was ready and excited. He was practically jumping up and down with excitement. Again…this was gonna be awesome. But then, as the ride operator pushed our lap bar down into place, my freakout started.
Suddenly, in an instant, my mind went racing: this is the fastest, most insense ride he’s ever been on. Don’t let his chest hit the bar. Don’t let his head hit the bar. Don’t let his head hit the back. Watch him. Watch him. What if his lips turn blue? What if his heart rate goes too fast? How will I know? Will I know? How can I stop this ride? Do I flag the guy down? Do I yell “STOP!” Do I yell “EMERGENCY!” How fast can a medic get here? What’s the closest hospital? I was like:
And then the ride started to move and I was like OHCRAPOHCRAPOHCRAPOHCRAP! It was the most scared to death I’ve been in a long, long time. No joke guys, I was freaking out. But then I heard it…the high-pitched, squealing, almost wookie-like laugh of the strongest little 4 year old on earth sitting next to me. I looked down and Nolan was smiling and laughing and looked like everything was a-ok. Only then I was able to relax. It’s blurry because we were going fast, but just look at this face:
I think the ride maybe lasted 2 minutes…but it was 2 minutes of pure joy. Preceded by holy terror, of course…but pure joy nonetheless. It was a moment I’ll cherish forever because after all the surgeries, all the therapies, all the tube feeds, all the meds, and all the concerns about what he might not be able to do, we had a moment where he got to spin, laugh, have fun, and be just an awesome 4 year old boy. It was epic and it meant everything.
This life we lead is a marathon and there will be many freak-out moments along the way, but man sometimes these kids of ours will just surprise us and lead us into a place of true joy.
Our family really wants to thank Merlin’s Magic Wand for their absolute kind generosity to our family and families like ours. Your helped us make memories that otherwise would not have happened. And to the staff at LegoLand in Florida: you guys are amazingly kind…keep up the great work!
As you know by this point, on top of having a CHD, Nolan has also struggled with feeding issues his whole life. Aside from slowly taking a couple bottles from me when he was a couple days old in the NICU, he’s never really eaten by mouth. He had a feeding tube placed before we brought him home for the first time and it’s been a life of tube feeds and feeding therapy for the little man. Progress on eating has really been up and down: we successfully moved him from Pediasure to using blended feeds and eventually managed to get Real Food Blends covered by our insurance, which took quite a bit of work. All the while he wasn’t really eating at all. His morning routine, in fact, involved some meds, some fluids, vitamins, and some Benecalorie, which is a high-calorie product that we mix with water or juice:
During Nolan’s stint on the rehab unit this summer, one of his speech therapists – Grace – gave us a few “local” recommendations for feeding programs. All of them were hours away, which made for a tough choice. In the end, we decided to try the feeding program at the University of North Carolina Medical Center because they had some experience working with heart kids. Once all the referrals were made we had our first appointment for early in the morning in October. Until this point, all of Nolan’s appointments are around 30 minutes away. Now we were facing this:
And not only did we face a nearly 3-hour drive, I had to take the day off work and we had to find people to drop off our other kids at school and pick them up. This was quite an undertaking. We left super early and made the drive…and barely made it there because of traffic. UNC Medical Center is on a really big campus, right next to the University. They have a massive parking deck with a $10 daily maximum and no validation in the hospital…BOO. It’s kinda weird having to go to a different facility after being so used to Levine Children’s Hospital and we didn’t know what to expect. We found the check-in relatively easily and went through all the initial paperwork and whatnot. Then we were sent to a different waiting room and were barely there before Nolan was called back. They got the usual weight/height/sats that everyone measures and then we were taken back to a room.
What’s unique about this program is that it’s run by a team approach. We had a NP from GI come in along with a nutritionist and the feeding specialist. All at the same time. Yes, you read that correctly. Working across disciplines: what a concept! The initial appointment was really, really long: they had a ton of questions, naturally, and wanted a good feel for Nolan’s needs. While they did give us some dry spoon exercises to do with Nolan at home, their first major concern was Nolan’s vomiting. Nolan has always had issues with throwing up ever since he came home from the Norwood. We talked to everyone we could about it and either no one seemed too concerned or no one could do anything about it. And absolutely no one would communicate across disciplines about it. God forbid. So this was different. They said the dose of meds he was on for his tummy was so low it wasn’t going to do anything so they prescribed him a different med – Nexium – that he would take once a day before feeding. Then they also recommended starting him on a different food blend called Nourish:
It’s a plant-based formula that they felt better met his nutrient needs (Real Food Blends apparently was short on some things, hence our need to add vitamins). Plus they said the addition of turmeric in the blend has shown to help kids with their reflux issues. I was skeptical: I just wanted to jump to the feeding and get it done as quickly as possible so we can stop driving so much. But hey, I don’t get to make that choice, right? For now, though, hey held off on the Nourish and just had us work with the dry spoon and new meds on Nolan and meanwhile they would communicate with Nolan’s current speech therapist to see if she was on-board with UNC’s recommended plan (she was, thank God).
We went back one month later and Nolan was showing a little bit of improvement with the vomiting and he did a good job taking the dry spoon. So the next step was to start him on Nourish. They made sure our DME provider carried it (great job on their part!) and told us they’d email the recommendations for switching over. What they didn’t tell us was…dun dun dun…we’d be bringing back to bleeping feeding pump. And when I say bleeping I mean literally bleeping.
This really made me pissed off because we had gone away from the previous Kangaroo pump and were giving his feed bolus by hand. Now we were back to this nonsense and we they wanted us to put him on continuous overnight feeds for 10 hours. TEN HOURS! Did they know how much this kid rolls around in his sleep?
We did try, though: we hooked him up and immediately this godforsaken machine would beep and beep and beep with some kind of error: No Flow In, No Flow Out, blah blah blah. And I hated it. Do you remember the movie Demolition Man? Where Sylvester Stallone kept cursing at that citation machine?
That was pretty much me.
So we fired off an email to the team and pleaded our case for not having the overnight feeds, at least. They responded that it was meant to help create a hunger sensation that would help with feeding and to trust them for awhile.
So there it was…trust. It’s hard to do, and especially hard when the team is hours away and doing something that inconveniences you. But that’s just what it is, an inconvenience for me…ultimately it’s meant to help Nolan, so we sucked it up and went with it.
Well I gotta tell you: between the meds and the feed blend, Nolan rarely vomits now. And even when it seems like he’s going to (usually when he’s upset), I’ve noticed he’s able to control himself and not do it. It’s amazing! We’ve also graduated from dry spoon practice to dipping the spoon in juice and Nolan has been doing a great job. Yesterday he sat down to feed at least 3 times and took at least 20 bites each time. Soon we’ll graduate to dipping the spoon in a little bit of puree. Baby steps. This is going to be a long process but I’m seeing some progress in our little man…and I’m starting to trust his feeding team more and more. It’s amazing what can happen when disciplines work together! So until now we’ll keep up the work and won’t head back to UNC until February, but it’s promising! As long as he keeps eating, we’ll keep driving. Whatever it takes. Go, Nolan, Go!
On Saturday, December 10th I woke up to a now-common sound: “Dad….DAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAD!” I hopped up out of bed and opened the door to our room to see little Mr. Nolan there in the hallway, arms held up, saying, “Take me downstairs?” I bent down and scooped him into my arms and he put his arms around my neck and rested his head on my right shoulder. Almost immediately Grant came up and I picked him up too. It was a very special day. I whispered, “Happy Birthday, big boys!” and I was immediately overwhelmed. Here they are…my two little boys…and they’re FOUR! I remember the mad rush to the hospital at 3am, the C-Section, the NICU stay for both babies. I remember being happy as Grant did good enough to go home after 5 days, and I remember the fear that grew in the pit of my stomach every day as I knew sometime soon I’d have to hand over Nolan for a major heart surgery in an effort to save his life.
In the years since, Nolan has been through so much and continues to endure quite a bit. He’s one tough little boy. And Grant has been a fantastic little (by 2 minutes) brother. Together they’re a wreck: a destructive force of giggles and tackle-hugs. There was a time where we didn’t know if Nolan would see 4…but here he is: 3 heart surgeries later and still smiling and still fighting. Each year at their birthday I reflect on what we’ve all endured. There’s so much to celebrate…so much to be thankful for. We’re thankful for our little family, for physicians, nurses, friends, family.
Happy birthday to my sweet Nolan and Grant…I can’t wait to celebrate year 5!
Hi Friends! Guess who’s back! I’m sure some of you were wondering when on earth I’d be updating the blog. I wanted to let you know that Nolan had his Fontan procedure and after 33 days we got to go home in mid-July. I decided to use that time for all of us to get back into the swing of things. Now that school has started back up and life is chugging along again, I’ve decided to fire up the blog again and let you know how Nolan’s surgery went. Over the next several posts I’ll be telling the story of Nolan’s Fontan procedure and recovery, so stay tuned!
Before I do that, though, I really wanted to thank all my readers for visiting Nolan’s facebook page and leaving kind comments and sending supportive messages there and on this blog. It really meant a lot to have your support behind us, it really made a difference! “Thank you” doesn’t seem like enough, and if I could thank you all in person, I so would. I’m grateful to be part of this supportive community.
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!
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!