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…
Early in the morning of June 16th, we woke up Nolan to make the 35-minute drive to Levine Children’s Hospital for his third open-heart surgery, the Fontan Procedure. I think it took everything within me to get out of bed and just get through the process of loading into the van. We dressed Nolan in his Super Nolan cape (courtesy of Heart Heroes – THANK YOU!) and mask and he felt super special. Because, well, he is!
As you can imagine I was a rollercoaster of emotion: basically I kept going back and forth between scared to death and completely confident and calm. I wasn’t as terrified as I was before his Norwood, and I wasn’t as calm as I was before his Glenn. It was somewhere in the middle. I’m sure it had something to do with the length of time between surgeries. Anyways, we made it to the hospital just fine: we parked and took Super Nolan inside and he walked around like he owned the joint. He definitely loves some attention.
The team checked us in, validated our parking, and escorted us to the pre-op area, where we would go through the familiar – but not comfortable – process of speaking with the surgical team, the anesthesia team, and nursing team. We watched TV with Nolan, gave him lots of hugs, and walked around with him looking at all the room numbers. I really, really didn’t want to let him go…and that became stronger as each second ticked by on the clock. Finally, Nolan got his loopy meds and the team came to take him back. They went one way and we went the other way, and I felt a total wreck…probably the biggest mess I’ve been in a long, long time. Now it was just time to wait in the waiting room…and wait, and wait, and wait. We knew that a long wait didn’t necessarily mean the surgery was going poorly, but mostly likely meant he had a lot of scar tissue to work through. Regardless, we received regular updates and I just did my best to occupy the time.
Finally we got the call we had been waiting for: Nolan’s surgery was done and successful. After a lengthy wait, we got up to see him – it’s hard to see him intubated and on all those med pumps again:
But I was so happy to see some good sat numbers and just to hold his little hand and tell him we were there for him. Next step? Get outta here.
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!
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!