Category Archives: surgery
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.
We were really happy that Nolan’s Glenn procedure went splendidly…in fact, he was up in Progressive Care the very next day! Now we had to settle in for his recovery period. While things looked good now, I remembered the 2-month recovery from the Norwood Procedure. All-in-all, Nolan did very well.
His color looked great, he was off oxygen, and he was overall a happy little boy. He was a little bit fussy when the “Glenn Head” would kick in, and I felt so bad for him, but the staff did an awesome job keeping him comfortable. At one point some teen pageant queen from SC came to pay him a visit and gave him a dolphin pillow pet. That was very sweet: Nolan really digged her…maybe he’ll look her up sometime lol
The great part about this procedure was that we were able to hold Nolan pretty much right away (just no picking him up from under the arms til the chest healed up) and I had quite a bit of time on the weekend to spend with Noli Poli and I could tell he was just DYING to get out of there…and so were we. Overall, the comparison between the Norwood recovery and the Glenn recovery was night and day.
On our 6th day there, we were told Nolan would be ready to go home! And boy was he ready:
What a change…look at that happy boy! And he was rockin’ some sats in the mid-80’s. Life was good for our little warrior. Bekah and I were super-happy too…no surgery again for a couple of years, God willing. Now we could really focus on Nolan’s quality of life: in particular his feeding and physical therapy. There was still a lot of work to do, but MAN…2013 had been a heck of a year and it was barely half-over!
Before we left the hospital, one of the Nurse Practitioners came to visit and gave us some great news: NO MORE CHAMP BOOK! We no longer had to record his stats and weight daily!
On July 17, 2013, after all his necessary pre-sugery work, we brought Nolan to Levine Children’s Hospital. I was pretty tense. Deep down, I knew and had faith that everything would be ok, but there was also the memories of the long recovery last time, with all its ups and downs and the fear that came with it. Luckily for us, Bekah’s college roommate Arianne came to stay with us and support us through this time. It was good to have someone there.
We took Nolan to the same room that he was in before his cath. They took all his vitals and we worked on keeping him happy. At this stage he was such a smiley little guy and whenever he was happy, be would kick his feet rapidly: I called it the Happy Bike. The anesthesia team came in to meet us and chat with us a little bit about the procedure. From there we prayed for our little guy and then it was time.
If you remember from way back in this blog, I talked about us walking with the nurses all the way down to pre-op with Nolan before his Norwood Procedure. We wouldn’t be doing that this time, and I wasn’t sure why. Instead one of the anesthesia team members held out his arms and I handed over our 7 month warrior…my hero…to be cut open for yet another time. While I was clinging to the faith I had, it was no less heartbreaking to see my little guy go. Next, though, it was time to go to that stupid waiting room that I hated so much. We checked in with the lady at the desk and saw that another of our friends, Karen, was already in there waiting for us. It was quite the surprise because we weren’t expecting her. It’s always good to have company during this stage.
And just like the first time we waited: we talked, we read, we watched tv, surfed the interweb, stared off into space. And periodically we’d get updates from the O.R.: anesthesia was completed, the first incision made, everything’s looking good, etc. Finally we got word that the procedure was complete and that Nolan was doing well, but it would be a little bit before we got to see him. I took that opportunity to go to our favorite Malaysian Restaurant to pick up some lunch. We ate and were very happy, but we were dying to see Nolan.
Finally we were allowed up to see him in the CVICU. It was crazy being back on that floor with its familiar sights and sounds and people. What was different this time was that Nolan was doing AWESOME and all those nurses were thrilled to see him and how well he was doing! Nolan was still a little out of it and was intubated, but all signs pointed to him doing well…AND His chest was closed! YES!
We held his hand and talked to him as he came to. He was in some discomfort, but he was looking great…even his color was amazing. The nurses and the rest of the heart team were very happy with his progress and the goal was to remove his breathing tube and get him up to Progressive Care within a day. And that’s what happened! Less than 24 hours after surgery, Nolan’s tube was out and we were already out of CVICU, which was bittersweet. Back to Progressive Care, where things were a bit more challenging. This time, though, we knew what to expect.
It was amazing how much better Nolan looked after the Glenn Procedure: his color was much better and not so pale, and his oxygen sats went from low 70’s pre-surgery to 85 post surgery. YES! Now for the recovery phase…one day at a time…
Once we got word that Nolan’s surgery went well, all we had to do was wait for an ok to go up and see him. It seemed to take forever, but having our friend Marc there to keep us company helped pass the time. Finally someone came to get us and brought us up to the CVICU to his room. And what I saw shocked me:
My little boy. My 4 pound baby was hooked up to so many machines. I was shocked. Completely numb. I don’t even think I said anything, I just couldn’t. In my mind I prayed and prayed, then prayed some more. Meanwhile the room was buzzing with nurses moving back and forth rapidly, giving meds, checking machines, etc. It was nuts. I couldn’t believe how swollen Nolan was…it didn’t even look like him. And (WARNING: PHOTO AHEAD), as Dr. Maxey noted, his chest was still open and I could see his little heart beating:
It was all so scary. I vaguely remember speaking to one of the nurses, but most of it was some Charlie Brown-style wah wah wah. Something about them doing an x-ray or an echocardiogram to see how his heart function is. I was just in complete shock. I mean it was kinda freaky seeing his chest open like that…ok really freaky, plus I was just kind of amazed at our medical technology and skill: they could perform surgery on a heart the size of a quarter AND they have all these machines that keep him healthy through recovery. Man, I couldn’t begin to list all the meds he was in: pain stuff, sedatives, meds to help with fluids, stuff to serve as feeds, he had a chest tube that was draining lots of gunk, AND he was on a breathing machine.
Besides the shock, I felt really exhausted in that moment. It’s like so much led up to this point and when I walked into the room it was the crushing reality that so much more was ahead. We had this huge mountain to climb together, except it’s like we had to climb it in the dark, since we wouldn’t know what to expect on a day-to-day basis. I had to get used to the new reality: this room would become our second home, and we’d have to get used to the beeping and whirring of so many machines and the visible beating of our son’s heart.
People like to say that “being a man” means being tough. I promise you, Dads out there, the “tough” you’ve known your whole life is garbage when you go through this process. The moment I saw my son like this it sucked the tough outta me. I had to learn what tough really is. And how did I learn that? I looked at that 4 pound baby to lead by example. THAT’S tough.
The nurse who escorted us from pre-op took us to this large waiting area. We had to check in with a very nice lady at the desk, who gave us a number, which would identify Nolan on the big screen on the wall. It showed patients in pre-op, surgery, and post-op. She told us to have a seat and she would give us periodic updates on the hour. Surgery was scheduled to begin about 8 and it was still pretty early. We picked a couch to sit on and tried our best to relax. Once we sat down and had a good hug, we realized how exhausted we were. I mean we hadn’t slept at all. Before I knew it, both of us had dozed off. You know how you get that feeling that someone is watching you? Well I had it and popped my eyes open to see our friend Darren sitting there across from me. Dude scared me to death! I was like, “How long have you been there?” and he said, “Long enough,” which is code for dude you were drooling. Darren is a pastor and an awesome guy, and used his chaplain credits to get in to hang with us, which was really cool…we definitely didn’t ask him to do that.
And you know what? I’m thankful for him. He prayed with us and just was there as a friend. At 9:11am the lady from the desk came up to me, asked my favorite question (“Do you speak English?”) and then told us that the surgeons have made their first incision and everything is going well. Well that was late, but at least they got started. So while we waited and I drank like 40 cups of coffee, Darren entertained us with a bunch of hilarious stories about his father-in-law. I mean laugh-out-loud stuff. I know this is going to sound crazy, but for a little while, it took my mind off of what was going on, and I’m so thankful for that. I like to laugh…as much as possible, in fact, but laughter didn’t seem like it was on the menu this day, but Darren changed that for us. The lady came back every hour to let us know things were still going well.
Eventually Darren had to leave, and Bekah and I moved to a different couch up against the wall. We watched and listened as people received their updates, left to see their loved ones in post-op, and basically sat around waiting like us. I definitely didn’t feel like chatting with any of the other waiters, so I didn’t. Eventually Bekah fell asleep on my shoulder…and I think I might’ve fallen asleep too, because I don’t remember getting updates during this time. Finally after about 5 or 6 hours of waiting, my legs and back were stiff so I decided to get up. I got a drink of water and decided to mosey on over to the screen to see where Nolan was on there. I looked at my sheet with his ID number, then looked at the screen…then to the sheet, then to the screen…and again. Um…his number wasn’t on there.
“OH NO,” I thought, thinking the worst. I could immediately feel my body heat up like 50 degrees. I turned to the lady at the desk and frantically said, “My son’s not on there. Why isn’t he on there?!” She was checking…and I was freaking. I was fearing the worst. She said something like “It probably means he’s out of surgery, I should get a call real soon.” And I was like “Probably isn’t enough!!!” And so I stood there…staring at that screen, arms folded, hoping and praying for Nolan’s number to show up in the Post-Op column. Nothing…nothing…still nothing. God, it felt like hours.
Suddenly the doors behind me opened. I turned around and saw Dr. Peeler, Dr. Maxey, and the rest of the surgery team, still in their scrubs. I sucked in a breath and held it, and waved a feeble hello. Dr. Peeler said “Let’s go talk with your wife” and I said ok and walked across the room on the shakiest legs EVER. I sat down next to Bekah and nervously held her hand. The team sat across from us in a half-circle. Dr. Peeler was the first to speak and said, “The operation went as well as expected, and he’s going to post-op now. Any questions?” And I was like uhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. Dr. Maxey chimed in, saying everything went well, but that due to swelling and Nolan’s small size, they were unable to close his chest, but that’s not uncommon. He then asked if we had any questions and I specifically remember saying “No…I am just SO happy to see you guys.”
What a relief…Nolan made it! Now we just had to wait for someone to get us and bring us up to his room at the CVICU. During that time, another friend of ours – Marc – came from work to hang with us. It was so good to see him too. And he brought Starbucks! My man! I remember he brought a chocolate chunk cookie and I ate the crap outta that thing, I was so hungry.
Thank God for good friends. Thank God for a great Hospital. And thank God for a great surgery team!
After my little (big) 3am moment with God, 6am finally came…and way too soon. The nurse came in and in the nicest way possible, told us it was time for Nolan to go down to pre-op. She did say we could go with him, though, which I’m not sure is a good or bad thing. I begrudgingly handed over my son as two nurses got him situated in his little bed, packed everything up, and whisked him down the hall. And let me tell you, these ladies were HAULIN’. I have a pretty big stride and I was struggling to catch up. Not to mention I hadn’t slept in Lord-knows-how-long and I probably smelled like a bad fungus. Anyway, we walked down several hallways and seemingly took like 3 elevators…and the whole time I walked in silence, but inside I was absolutely scared to death.
How scared? Back when I graduated 8th grade, I got one of those portable basketball hoops as a gift. We used my uncle’s truck to bring it over to my cousins’ house for a graduation party at their pool. To weigh the hoop down in the back of the truck, we all sat on the base of it (the part you usually fill with water). When the party was over, it was time for me and my hoop to go home, but my cousins didn’t feel like helping. So I was like, “Fine, I’ll do it.” And off we went. At some point on the highway, we hit a bump and the hoop – and I – was airborne. The hoop pretty much flipped up from under me and the basket was scraping along the road. I would’ve been tossed from the truck if I hadn’t crashed into the tailgate…thank God it held. So yes, THAT was the scariest moment of my life…until now…
The whole time I kept thinking in my head “Be strong and courageous. Be strong and courageous. Be strong and courageous.” But you know what? It was really hard. If I hadn’t had my moment with God and without His guidance, I would’ve been a hopeless wreck. We got to the surgery floor and there were people EVERYWHERE, it was like Grand Central down there. They pushed us into the Pre-Op area, where we consoled our little baby, and each other, and got to speak briefly with the anesthesiology team about what would be going on. I tried my very best to look strong even though inside I was crumbling. Finally the time arrived and the medical team to get Nolan and we couldn’t follow. I leaned down to kiss Nolan lightly on the head and I tried my best to say “It’s ok buddy, be strong” but I’m not even sure I got every word out, because I was so choked up and my eyes were tearing. I reached out to gently stroke his cheek, possibly for the last time, and my hands were shaking uncontrollably. I remember walking over to this little sink area there and grabbing some paper towels…my immediate thought was that they would be for my wife. Yeah right, they were for me. They wheeled our 7-day old away and that was it…we stood there without our son, leaving him in the hopefully-capable hands of strangers. A nurse came to take us to a waiting room, and I put my arm around my wife and just cried.
The male mind is pretty basic…whether you’re a handyman or not (I’m not), your mind always goes towards “fixing.” You want to fix what’s broken, find the problem and repair it. Here, I had something I couldn’t fix…and never could. I was absolutely, positively, helpless and I didn’t know what to do but wait…and have a lot of faith. And that’s all you can do too. I promise you, the HLHS experience is absolutely terrifying, and I’m not being dramatic. You will have spent your whole life seeking control, in some fashion, and then that control goes out the window in a flash…as quick as a diagnosis. So you’ll have to learn to cope, learn new strategies, look for small victories, etc. It’s a journey, but please remember you’re not in it alone…
The Norwood Procedure is the first surgery for all HLHS babies and usually occurs sometime during the first week of birth. It is the most complex and highest-risk procedure that an HLHS baby will go through. Since the heart’s left side does not pump well, the heart is rebuilt so the right side of the heart becomes the main pumping chamber.
The blood vessel leaving the right side of the heart called the pulmonary artery is divided. The far end (the end closest to the lungs) is sewn shut. The near end (the end closest to the heart is sewn into the aorta, which is the large blood vessel leaving the left side of the heart. A patch is sewn in this area to make the “new aorta” or neo-aorta bigger and stronger. Now all the blood leaving the heart goes from the right side of the heart through the pulmonary valve and out to the body through the new aorta. The wall between the heart’s two upper chambers is removed. This allows red blood coming back from the lungs to flow from the left upper chamber to the right upper chamber. The blood then goes to the right lower chamber and out to the body.
After the Norwood, the right ventricle pumps blood to both the lungs and the body. The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs. Nolan will be having a variant of this procedure called the Norwood-Sano, which means that a Sano shunt is being utilized. The Sano Modification of the Norwood involves the placement of a conduit (light blue tube in the picture above) between the pulmonary artery and the right ventricle.
The recovery period for the Norwood procedure averages 3 to 4 weeks, but please don’t be surprised if it’s longer (you’ll see). I can’t stress enough how serious of a procedure the Norwood is: it’s not a simple 1-hour fix, and it’s only the first of 3 surgeries an HLHS baby will need.
After a couple days of both boys being in the NICU, we were told that we were going to speak with the surgeon. Well we already did that, right? Well yeah, we did meet Dr. Peeler, but this time we’d meet the other surgeon, Dr. Maxey. My first thought was “Ok, what can he tell us that we don’t already know?” but we agreed. Dr. Maxey chose to meet us in the NICU so we could be close to our kids…definitely a nice first impression. He was very kind and personable and pulled up a chair and said, “I’ve cleared up my schedule to be sure I give you all the time you need to have your questions answered.” WOW! That’s pretty special, right?
So Dr. Maxey gave a quick rundown of what HLHS was, which we were pretty good with, and then began to describe the initial surgery, which was called the Norwood Procedure. He was very, VERY clear that the Norwood Procedure is a very serious open-heart surgery. It is intricate and challenging and a baby’s heart is roughly the size of a quarter. A QUARTER. How the heck do they do surgery on that?! Then he said something that absolutely wrecked me: nationally about 20% of kids (1 in 5) do not make it through the Norwood Procedure. Oh my God. BUT, he said, he and Dr. Peeler have a ton of experience on the Norwood and do each Norwood Procedure together. He said their rate of success is 97%. Whew, that’s much better. But…what if Nolan ends up as that tiny 3%? How would I cope? What would I do? Is that even fair?
Dr. Maxey was such a nice guy. He did a great job of reassuring us we were in the best place for Nolan, but still reminded us that this surgery was very serious and could take upwards of 6 hours or more. He said sometimes they won’t be able to close the chest post-surgery due to swelling and that’s ok. He said he had time and asked us if we had any questions. I’m not sure if I even asked him any…honestly I was nervous for my son and just as much nervous for myself because I realized I’d never been so anxious in my life. Surgery was set for the morning of December 17th…7 days after Nolan was born.
I enjoyed meeting Dr. Maxey: he does a great job of being informative and reassuring. He and Dr. Peeler make a great team.