UPDATED Jan 2026: Cardiology Update December 2025

Another year, another cardiology update. ❤️

UPDATE – January 28, 2026 – 

Just got off the phone and I have news. This 4th surgery is actually way more involved than I thought it would be and it makes me wonder just how sluggish Caden must have been feeling lately. He’s going to feel so much better!

As far as timing… first we are going to have a tele-health appointment with the surgeon so that he can explain everything he’s going to do. Caden can ask all of the questions he wants and we will all have a better mental picture of what is going to happen. His surgeon is amazing with wonderful bedside manner and more importantly, Caden trusts him explicitly. I imagine this will calm his nerves (and mine) quite a bit!

After that, he’ll have a CT scan so that the surgeon has a clearer view of his coronary arteries, which were not shown clearly in the MRI.

After that, he’ll be scheduled for surgery which will probably be sometime this spring.

To keep the actual procedure information as plain English as possible…

They are going to remove a portion of his aorta and replace his leaky Truncal valve (hence the name, Truncus Arteriosus). This part of his heart has never actually been worked on, and we were told that ~20 years is a good amount of time for them to last in patients with his particular condition.

Then they are going to replace the conduit that runs from his Pulmonary Artery to his Right Ventricle in his heart. His first was 15mm placed when he was 3 months old, then it was swapped out for a 23mm conduit when he was 8 years old (in 2015) and now he’ll get swapped out once again – this time for (what I’m presuming to be) the largest size they have. Just think of all that extra blood flow!! He’s going to be pumping so much more efficiently I can’t imagine how much better he’ll feel.

His pulmonary branches might also need dilating or ballooned open, but they’ll make that call at the time.

It’s hard to believe that this is his 4th heart surgery and all with the same surgeon. It sure is bittersweet that Caden is aging out of the pediatric program. I’m off to work on a really cool heart that I can crochet for him as a “thank you” for everything that he has done, over and over again, in improving both the quality and the length of Caden’s life.

Thanks for reading, and for keeping us in your thoughts. I’ll continue to share with you along this journey. ♥

UPDATE – January 23, 2026 – 

It feels like forever ago that I wrote this original post. I suppose it has been about 6 weeks now and just this morning we got answers… kinda. Grab a cup of coffee and let’s catch up…

The Cardio Vascular surgery team in KC meets regularly to review cases which have been presented by each individual cardiologist in their network of satellite offices. I have always imagined a big, brightly-lit boardroom filled with super smart people all sitting around an impossibly long table, debating the pros and cons of a certain procedure for a particular person. I suppose that that is, in fact, essentially what happens.

Today was that day.

They had decided to wait to present him to the team until now. Since his stress test and MRI was in the middle of December, a time when many essential folks take days or weeks off of work to visit family or to enjoy the holidays, and since Caden has been more or less stable, they waited until everyone was back in the office with fresh eyes.

We got the email this morning from Caden’s main cardiologist. Unfortunately, the surgeon that performed his first three open heart surgeries was unexpectedly unable to be there today, but everyone else around the table agreed that “intervention” is needed, meaning that he does, in fact, need another open heart surgery. His doctor said “that intervention would include both the left side of the heart, the truncal valve/aortic valve and the right side of the heart”.

So basically the whole shebang.

Caden took the news remarkably well. He has felt this coming on for what I estimate to be well over a year now, and for him to have that validation that YES something IS functioning poorly, along with the prospect that he will feel much better soon, he honestly seems excited to have it done.

I’ve shared more about Caden’s specific heart defect in the past (and you’re welcome to read more about our early experiences here and here), and the fact that he would always need another surgery. We’ve known this his entire life.

His most recent open heart surgery was in August of 2015 and they have always quoted us ~10 years. This seems to be right on pace with that, and with how Caden has been feeling lately.

As his mom, I can tell that he is ready for surgery. While he is also navigating his second (and, technically third) life altering diagnosis, it has been clear to me for some time that he has not been feeling his best cardiac wise.

Caden is such a joy to be around when he feels healthy. I am very much looking forward to him being and FEELING the healthiest version of himself.

The surgeon that was unable to attend today will review today’s meeting on Monday. We will know more of a timeline at that time. It will be soon though, and I’ll keep everyone updated!

Thank you for your continued thoughts, prayers, and support. ♥

Original Post – Dec 9, 2025 –

This week Caden and I are making the trip to Kansas City for another round of cardiac testing – an MRI and a stress test – this time to decide if he’s ready for another open heart surgery or if they are going to hand him off to the adult congenital heart defect team to manage his cardiac care going forward.

Now that he’s 19 years old he’s aging out of the pediatric team in Kansas City – a team that has consistently been amazing (he had the same surgeon all three times!), and as ironic as it sounds, has been a comforting place for him/us as we’ve navigated this journey. To be honest, I think having the same surgeon was more comforting for me than it was for Caden. He has a perfect track record where Caden is concerned and I will take all of the comfort and peace of mind I can get from that.

At least something was consistent, if only that it was the place in which everything happened.

The moment you hand your child over feels as if you’re on a roller coaster, inching toward the top of the hill. Your heart is racing, you know the top is right there, and as soon as the bed is wheeled away, your child dressed in their cartoon hospital gown and the too-big hair net, the roller coaster tips over the edge.

The week before you’re afraid to pay too close attention to anything in case it ends up being the last time it happens. Sleep is impossible.

Your stomach is in your throat, you are gripping onto anything you possibly can, just trying to hold on in this very moment. This constant state of anxiety, fear, and expectation lasts not only through the many hours that the surgery team is working to prolong your child’s life, but it rears its ugly head during each follow-up appointment, each dose of medication, each time they complain of shortness of breath or a pain in their chest.

Was that a tinge of blue I just saw on his lips? I wonder if I should make an appointment?

For Caden it has always been a waiting game to the next big thing. We’ve always known he’d need multiple surgeries as he ages, whether that being the conduit needs to be larger to accommodate his stature or it has started to harden/calcify making the rest of his heart have to work overtime.

Caden believes it is time for another replacement surgery. We know that whatever the tests say this week, he is in the best hands possible.

All this to say that while I/we are not thrilled to be headed up to the hospital yet again, we are thankful and comforted by the fact that we know the team, we know the routine, the waiting room, the check-in procedures, etc. At least its familiar. For now, until he is passed on to the adult care team.

If you think about it, there hasn’t ever been a need for adult congenital heart defect (CHD) cardiologists up until medicine advanced enough to allow those infants survive to adulthood. It’s wild to think that had Caden been born just a few decades earlier, he 100% would not be alive at this age. I mourn for all of the parents that came before me who lost their children to heart defects or abnormalities – many never knowing why.

I will let you know how the appointments go by updating this post when the results are back, but there is something else I’d like to share with you.

This past couple of years have been incredibly difficult for my family. Just when I thought things were starting to settle down from my divorce and moving multiple times, we were thrown another curveball.

Caden has been diagnosed with another major diagnosis that will unequivocally affect the way that he lives his life – for the rest of his life. I have spoken with Caden at length many times over the last ~18 months about what all to share with you. He is not comfortable with me sharing any details, and I 100% respect and understand his decision.

As his mother, I also feel there is a space for me to fill that will help to either shed light or to offer hope as it pertains to parenting an adult child with extra+ needs. Or maybe I just need to write it down and say it out loud.

When he was first diagnosed with the heart condition (Truncus Arteriosus) at the age of 2 months it was early 2007 and the internet was not what it is today. I scoured the entirety of the new “world wide web” to find other families like ours. I joined a support group for families that were also blindsided by this specific congenital heart defect. I wanted to see how their kids were able to fight their way past every hurdle, every setback, and every new obstacle in their path. I scoured those pages looking for any grain of hope I could find.

As cliche as it sounds, time really has helped to heal some of those wounds. Now I am one of the parents offering a shining light for newly diagnosed families. It took a lot of time and therapy for me to accept the fact that what he/we went through was traumatic, and that it’s okay if I struggle with the emotions of it all sometimes.

I started sharing Caden’s story and the various procedures and operations he’s gone through over the years to bring awareness to CHD and to keep our friends/family updated. Little did I know that Caden’s journey would be so impactful to those both in our physical lives: our parents, siblings, aunts, uncles, friends, and community, but also to the entire “world wide web” that is what the internet has become today — good, bad, and ugly. So many people have come to love and care about my boy. It brings tears to my eyes and the words to express what that makes me feel are hard to come by.

All this to say that I have joined another support group, this time for parents of adult children suffering from his recent diagnosis. To be as transparent as possible, because after all the entire point of the HEART in Heart Hook Home is to share our story, joining that second support group was one of the hardest things I’ve done of late.

Not only did I join, but I added my first comment. Now I am actively participating. Somehow this makes it all so much more real.

It is absolutely heartbreaking for me to start this whole search-for-a-support-group process all over again, nearly 20 years later, and with a diagnosis that is just as scary, if not more so.

Together we are navigating the new medications, monitoring their side effects, making sure they don’t interfere with his cardiac medications, and there have been dozens of doctors appointments this year (he’s had 177 insurance claims so far!) and all this as a freshly graduated, just-turned-19 year old young man. It’s exhausting. He’s amazing.

I am just now starting to see a path forward. It is narrow and it is dark and it is scary, but there IS a path and though I’ve been fumbling through it, I am starting to see our way.

It will be okay. He will be okay. He has another set of amazing doctors managing this aspect of his care, working with the cardiac team to make sure that he’s got every single base covered. Caden has BIG dreams. We are working toward making as many of them come true as we can.

I will keep you all updated, and know that I appreciate all of your support and love throughout the years. ❤️