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 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!