Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around. This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!
Yes, Nolan is finally getting back into school. After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all. I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic. So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home. Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.
We decided to apply for an early-childhood preschool program through our local public school system. Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan. Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).
I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan. He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible. This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro. They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him. I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting. He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on. WOW. The next meeting was with the school nurse to go over his needs and care, The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc. I was really, really impressed.
So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does. All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him? One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion. First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about. He had other thoughts. He looked around and said to my wife, “Well this is disappointing.” LOL This kid!
His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan. The teacher would also have an assistant in the classroom. We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME. ]
So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.
Yes…in true Nolan fashion, he caught a cold the weekend before the start of school. I was like:
So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third. And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!
I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:
Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:
For me it was such a big, moving moment. I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life. And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy. And I couldn’t be more proud of my superhero.
We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room. There was playing! And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.
In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others. This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight. This handoff signified that Nolan is beating the odds!
He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there. He’s also been more of a chatterbox since starting school, which I really like. And – as always – Nolan is super silly! We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!
For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be. Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k. I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok! They’re all different in their own awesome ways, so embrace it. But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied. Ask questions…LOTS of questions. And then ask them again if you need to. Get your child’s doctors involved. Develop a good IEP plan with your child’s school so that you have all possible bases covered. Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!
If you ever meet Nolan and spend more than 15 minutes with him, you’ll know that there are things that he likes, and then there are things he is obsessed with. Paw Patrol? Oh he likes Paw Patrol…sometimes a little, sometimes a lot. ABCs? OH. MY. GOD. It’s his favorite thing on the entire planet earth. He’ll watch alphabet videos on YouTube for hours, his favorite toys are alphabet-related, etc. He’s crazy about it. Then came numbers. Of course, we can’t forget his best friend Monkey. Now there’s something else to add to it: jumping. This kid loves to jump and it seems like lately that’s what he likes to do: he jumps on each letter of his alphabet mat (because of course), he jumps whenever I’m holding his hand and we’re walking somewhere, and he even jumps when he’s happy about something. Example: I’ll ask Nolan if he wants to watch Paw Patrol – he’ll squat down low and spring up into a jump saying “YES!” He especially loves jumping on trampolines:
Look at that kid catching some air!
I love it, though…he’s super cute when he jumps. We recently found someone nearby who was giving away a 7-foot trampoline so I picked it up and put it in the back yard and it was like Christmas for Nolan. He can jump on it all day (of course he goes through his alphabet forwards and backwards and counts to 100 while jumping)…and he won’t get out of it without a fight.
Now Nolan isn’t getting some kind of crazy vertical on his jumps, but watching him jump even a little bit off the ground really struck me as symbolic. Maybe the space between his feet and the ground is only 6 inches or so, but that space speaks to years of hard work at physical and occupational therapy.
I remember the early days of Nolan struggling to sit up on his own, then trying to crawl. The crawling was so hard: he’d cry and scream and it was so tough to see him that way, especially with all he’d been through. But eventually he crawled, then he stood, then he walked. Since then Nolan has progressed to going up and down stairs and, yes, jumping. Lots and lots of jumping.
And when he jumps, the space between his feet and the ground brings a smile to my face. I like the space between: it’s a good reminder of a little boy who faced major odds and kicked some butt. I think sometimes we (myself included) as heart parents get caught up in the what might happen part of our journey. Will there be a transplant down the road? More surgeries? Will the liver be ok? And we worry ourselves sick. Sometimes we need to hang out for awhile in the space between. Or at least admire the space between and what it represents.
For you, the space between might be one less medication, it might be one less surgery, it might be a clean echo or cath, it might be your baby finally talking or walking…it might be a little boy jumping with all the joy in his heart. Whatever it is, please take time to appreciate the space between. I’m not saying don’t worry about anything…we’re always going to worry…but instead look for the little symbols of victory in your heart warrior’s life. They can be so easy to miss, but so powerful once we see them for what they are. For your own sake and your own mental health, give yourself permission to see and celebrate the little wins. And by all means, celebrate your warrior for his or her victory over that thing that’s trying to hold them back: tell them you’re proud and let them feel free to smile, or even…jump.
There are many times throughout this journey where you’re faced with situations, appointments, and dates that seem like they only exist to crush you. The next cath, the upcoming surgery, the impending birth of your heart baby. Sometimes when life gets chugging along, you hit those speed bumps where you get frustrated at the unfairness of it all, and you get angry and life starts to feel like it’s swirling. It’s during those times where we crave some words of comfort and inspiration. I know that many of you reading this may be going through those moments right now, so I wanted to share something that inspired me, which came from an unlikely source (don’t you just love those?). So follow along:
Lately my kids have really been into the Disney movie Moana. We have the DVD and the soundtrack. I’m not complaining, though: I actually really like the movie and its music; in fact, it’s often stuck in my head. Not to spoil any part of the movie, but there’s a part towards the end where one of the characters seems like he is performing a Haka dance. Now you guys might be familiar with the Haka: it became popular over the last few years once videos went viral of the All Blacks rugby team of New Zealand performing the Haka before they begin each match.
If you haven’t seen it, it’s amazing:
So after seeing it in Moana, I ended up in a good ol’ internet rabbit hole where I started reading about the Haka dance and it’s meaning. So the Haka is a traditional Maori war dance performed before battle to display a tribe’s strength and intimidation. It’s an amazing thing to see and, yes, very fierce and intimidating.
So what does this have to do with us? Stay with me…
My interweb searching lead me to another popular video of the Haka being performed by groomsmen at a wedding. It turns out the Haka is also performed during special ceremonies and celebrations and to show reverence to others. The performance was powerful and moved the bride to tears. What I really wanted to know, though, was what on earth they were saying during the Haka. I did some digging and it turns out this particular Haka is called Tika Tonu, which was composted by a chief for his son, who was experiencing some difficult times around 1914. When I read the words, it blew me away:
What is this problem you are carrying?
How long have you been carrying it for?
So son, although it may be difficult for you,
And son, although it seems to be unyielding,
No matter how long you reflect on it,
The answer to the problem
Is here inside you.
WOW. Just WOW. I must’ve read this 20 times and it still moves me. You see, friends, what you’re facing is hard: handing your baby over to a surgery team, fighting with your insurance, scraping up money for another month of medications. Whatever it is, it’s hard and it may seem like it’s too strong for you and you don’t know where the strength is going to come from…but it’s right there…inside of you. Through the tears, the sleepless nights you endure. You don’t give up and I encourage you never to give up! The rich, the powerful, the connected – they can’t do what you’ve done so far. You haven’t crumbled under the pressure…and every morning that you wake up and get out of bed is another day that you’re fighting back and you’re winning.
So yes, while it seems unyielding, you are capable of much more than you even know…so keep fighting!
I love how much this spoke to me, and to think it all started with a Disney movie. I really enjoyed learning a little bit about this beautiful culture. Here’s the wedding Haka video (with translation) for you to enjoy (look how fierce that bride is when she joins in!):
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!
Every hospital has The Intersection. Every heart parent has stood at The Intersection. This is the place where it all becomes real, where it’s go-time, where you whisper that last fervent prayer before letting go. You woke up early to come to the hospital for a surgery date you’ve been dreading, you’re ushered up to a pre-op room where people come to get you to sign here, initial here. Maybe you review some last-minute information and meet the surgery and anesthesia team. But eventually the moment comes where you enter The Intersection. At our hospital, you step out of the room and into the hall where it forms a T: this is the place where a group of people (and your child) turn right while you have to let go and turn left towards the waiting area.
The Intersection is a heavy, heavy place. It’s the place where fear and doubt seem the strongest and where you muster every last bit of hope left in your body and try to project it on the people turning right. For a brief moment all those thoughts cross through your mind: did I pray hard enough, have I been good enough, have I been a good parent, did I give enough hugs, was this the right choice, are you sure it couldn’t just be me instead of him? It’s such a tough place because to turn right is handing your child over to certain fear and pain, which is necessary to live. To turn right is to be filled with fear and tears.
I don’t write this to merely drum up our old fears, but rather I spell them out for a different reason: to thank a group that I think often goes overlooked. A couple months ago I was asked to share Nolan’s story with our surgical services team at work. This was a massive group of nearly 200 people all in their green scrubs and funny giant shower cap thingies. They have their staff meetings at like 6am, which is bonkers, but I digress. As I walked to the auditorium, I was thinking in my mind what to say and this idea of The Intersection hit me like a ton of bricks and I just had to share it. So I shared Nolan’s story and at the very end I said to them, and I’m paraphrasing here:
“There’s a place I call The Intersection. Where Nolan goes one way and I can’t follow, so I have to go the other. This is a really tough place to be because I know where he goes there is pain, and where I go there are tears. But as I stand here in front of you I want to thank you, because when he makes that right turn I’m essentially handing him over to you…the people I don’t even see…to save his life. And without you, there is no Nolan, so I thank you.”
I gotta tell you, it took everything in my power for me not to lose it there. Not to mention it was 6am so I was already a wreck as it was. But I meant it. You see, while our amazing surgeons make the news and magazine covers and whatnot, there’s a whole team of people behind those operating room doors who we will never see or meet. They keep things clean, keep things stocked, keep things moving smoothly and Lord knows what else they do. They are so important to the success of these surgeries and I’m not sure they get the recognition they deserve.
So while I know it’s painful to think about The Intersection, remember that it’s Thanksgiving week: let’s channel those thoughts into some genuine thanks for the surgical services teams who have played such an under-the-radar role in the success of our kids. I encourage you to share this post on social media, maybe write a card or note to the surgical services team at your local children’s hospital. Whatever it is, just make sure you let them know how much you appreciate that they’re there on the other side of The Intersection.
If you’re reading this and you’re part of the team who wears the green scrubs and the funny shower caps: just know that our family thanks you for your hard work. Let this recognition encourage you and your teammates to know you are loved and appreciated for your work…keep it up!
I’m sure before you had a child that was born with a critical illness, you knew of your local Children’s Hospital, but you didn’t really know about it. You’ve probably said to yourself, “I’m glad we have it, I just hope we never have to use it.” For you that wish didn’t come true and ushered in a reality that you never expected.
Like all of us, you’ve made many trips to and from these hospitals and walked through the same set of doors over and over: rain or shine, sleet or snow, holiday or humdrum Wednesday. As we left our – hopefully – last surgery with Nolan, I started to really think on the significance of the front door of the hospital.
The Door can lead to our greatest fears, but also our greatest hope. There have been way too many times where I’ve had to walk from the parking garage to these doors, and every step closer makes me more scared and more nervous. Because on the other side of The Door is something scary for my son, something unknown, something painful, but something necessary. But also on the other side of those doors is a team of people who have the professional training to give your kid a shot at a full life. This door also leads the way back home…it says “we made it.” The Door leads to thanksgiving…to joy…to peace.
The Door also leads to suffering. And before you think I’m getting too heavy, just let me say that I believe we don’t talk about suffering enough when it comes to healthcare. Because it makes us uncomfortable and carries a negative connotation. But like it or not, this is the reality of what occurs every single day at a hospital: innocent kids given a diagnosis they don’t deserve, losing time on a childhood that should be free of pain and fear. There are parents who walk through those doors everyday consumed with thoughts like: is he going to make it? How am I going to pay for this? How long? How much more can I do? What about work? And on and on and on. They suffer, too.
Healthcare workers: you have such a power within your hands to impact suffering. Sure, if my son hurts you give him something for it. If I’m cold, you give me a blanket. That’s what’s considered inherent suffering. It’s tied to the thing we’re here for. But what else? There’s another type of suffering called avoidable suffering and preventing/reducing this takes a lot of effort and isn’t something you learned in school. What does this look like? It’s the worker(s) that walk past the lost parents in the hallway, because “I’m too busy right now.” It’s the worker that doesn’t make eye contact. It’s the one who talks down to people. It’s the one who won’t realize that the hospital isn’t quite home for a sick kid, and won’t go beyond the scope of their job description to make that better. It’s the worker who operates off of a checklist instead of a heartbeat. It’s the one who sees a parent as “pushy” or “snappy” without realizing that we…are…suffering. Once you realize that and try to put yourself in our shoes, it will drastically change the way healthcare is delivered. Because human connection and empathy are a powerful way to help heal. I know you didn’t get into healthcare for checklists, productivity reports, and to spend half the day scouring the building for the last working med pump. When you empathize and see suffering for what it is, you will reconnect with the reason you got into this business.
What about those who walk back out the doors and re-enter their lives? To friends and family: you play a crucial part in alleviating suffering, too! Please realize that while the surgery was a success, and the prognosis is good, we’re going back into a world that’s forever changed. There might be medications to give, multiple appointments, tube feeds, endless stops at the pharmacy, loss of work, increase in stress, and a new schedule that basically says we can’t hang out like we used to. We want nothing more than to go back to that, but this is our new reality. And it’s really, really hard sometimes. And we need you. Don’t stop inviting us to stuff: one day we’ll surprise you and say yes. Don’t stop asking how you can help, even if you don’t know what you’re doing. Realize that while we might wear a smile, it’s not always that way in our minds. We’re always going to worry about the future, that’s just how it is. So text your friend, send a card, cook them a meal…just let them know they’re loved. And try to understand what it would be like for you if the rug was suddenly pulled out from under you and you’re left to put it back together. And I also can’t let this paragraph end without saying that unfortunately there are people who walk through The Door empty-handed forever. I cannot imagine the pain these families face. Please be there with love and patience and kindness. If it was you, you’d want the same.
The Door is a place of great heaviness, but there are things we can all do for those who are currently standing at The Door. If we realize they have fears and are suffering, we can surely do things – through compassion and empathy – to give them the power of hope and joy. They can walk into the hospital knowing they’ll be treated like family. And they’ll walk out knowing they are truly loved.
So this was new territory for us…the Rehab unit. While Nolan’s weakness was unexpected for us, we are always willing to do whatever it took to make him better. So to the 4th floor we went. We met with Dr. Tsai, who was over that unit and he was a very kind, compassionate guy…we really liked him. For some weird reason we technically had to be discharged from the hospital and re-admitted to the Rehab floor, even though we never once left the hospital. But oh well.
One thing became clear right away: we were outside the friendly confines of our usual CVICU and Progressive Care units, where caring for kids with CHDs is right in their wheelhouse. Here? Not so much, but that’s not a bad thing. We just had to do a lot of explaining and re-explaining, and – of course – resetting the blasted pulse ox machine so it wasn’t beeping every 45 seconds. A slew of therapists came through to do initial evals on Nolan and we learned that everyday except Sunday he would have up to 3 hours of therapy a day and they would come in every afternoon to post the next day’s schedule on a calendar in our room, which was pretty cool. It would have the therapy, the therapist’s name, their picture, and length of time. They even scheduled nap/rest times. I actually liked knowing who was coming and when, as opposed to other floors when people just show up (you know how that is…come on, people). Otherwise the staff worked pretty well with us as they got used to Nolan and let us kinda control how often they’d come in and bug him and even let us give most of the meds if we were able. That really ensured a more restful night…for him, not for us: we slept on an awful, skin-eating vinyl couch, but whatever.
On Nolan’s second day they jumped right into things like helping him stand and use his arms for play:
It was a rough go at first: he was still very weak and still on oxygen so things were slow-moving and he got tired easily. But this is Nolan we’re talking about, so he’s a trooper! We enjoyed walks around the hospital in his wagon and even fun time in his room…one of his favorites was playing Bingo:
The combo of letters and numbers was right up his alley. We’d use the TV in the room to tune into the radio station in the lobby and he would call and say “BINGO!” whenever he’d make a line. Then two of the interns would come up dressed like Disney characters and bring him a prize. He LOVED it.
So on and on it went: Nolan continued to work really hard and began making some good progress. He even got some visits from the therapy dogs:
We got to meet some families there in that unit who had been there for some time and would be there for some time. Their kids were going through some real difficulties and my heart went out to them. We knew Nolan would regain his strength and for that I’m thankful. Nolan started getting more energy (and got pushier and bossier, as is his custom) and eventually we got to this point:
That is a post-Fontan, little beast, completely walking on his own with NO oxygen! YEAAAAAAAAAH BOY!
So the next step, then, was to get the heck outta this place and get back home! WOOHOO! And then finally…33 days after we went in for the Fontan…Super Nolan walked back through those hospital doors and we made our way back home, where we can focus on an amazing future for this little nugget:
After a long, exhausting day of waiting for Nolan’s surgery to be done, we were ready to begin to road to recovery. As I’m sure you know, all heart kids are different, so recovery times can vary…but we were hoping for something like 2 weeks, 3 tops. They managed to extubate Nolan late that same night and then they continued to work on stabilizing his blood pressure and managing his pain. You could tell he was in some discomfort because his brow would furrow from time to time.
Eventually he settled down a little and even asked for some water and agreed to watch an ABC video (he is obsessed with he alphabet). It seemed like he was showing some definite signs of himself.
Still, he did just go through a major surgery, so he was pretty agitated and restless. He would try to toss and turn, I’m sure it was an effort to be more comfortable since he likes to sleep on his side. He even almost rolled completely over at one point, it was like trying to hold down an angry eel. But we settled him down. His belly was distended so we held off on feeds for the time being and we just let his awesome medical team work their magic. According to the physicians over the next several days, the Fontan looked like it was working properly and the fenestration was doing what it should. If anything they wanted to keep an eye on some narrowing in his pulmonary artery, which they already ballooned once during his cath earlier this year.
Nolan continued to be restless and fussy and it was really difficult to keep him calm. He was draining quite a bit from his chest tubes, which is good, and the plan was to get his belly to calm down and to get him up and moving to help with the drainage. Eventually we got one chest tube out while the other continued to drain. Every day they came to do an x-ray to see how his chest was doing and eventually they had to put in another chest tube. I wasn’t thrilled about that, since those are obviously uncomfortable for him, but if it’s one step closer to home it needed to be done.
The biggest concern was around Father’s Day, where I noticed considerable weakness in Nolan’s arms. In fact, he didn’t really move them. I brought this up to his medical team, and the next day, and the next day, before someone finally looked into it. That was extremely frustrating because, you know, you want to be heard as a parent. But with his nurse’s help, we were able to advocate for a closer look. They some neuro checkups and a couple EEGs to rule out any neurological problems, and determined that some big-time therapy would get that function back.
Eventually we got Nolan’s agitation under control and got him moved from the CVICU to the Progressive Unit. While up there he was able to get out of the bed and ride around in the wagon and even got some visits from the therapy dogs. We began some in-room therapy with him and he was happy to realize that those two little legs still worked great and were getting stronger. We got feeds re-started on him and eventually both chest tubes came out and those daily x-rays looked clearer and clearer.
Now normally we would be discharged from the Progressive Unit and head home, but since Nolan was still very weak, we had to be transferred to the Rehab Unit. This would be a whole new experience for us…