For the last 7 years or so, I have been sharing my son Caden’s heart journey with you. I have not given a full update in quite a long time, partly because there has been little to update you about. It seems that that too may soon change, and as part of my effort to share our family’s CHD journey it is time for an update.
UPDATE (September 20th, 2023)
Yesterday Caden underwent the cardiac MRI and the cardiac stress test in Kansas City. The MRI came back fairly clean. All structural issues present have been on the radar for quite some time. Some of the issues, like the leakage of the truncal valve, have been classified as “moderate”. Other than that the structure of his heart looks more or less the same as other recent tests have suggested.
During the stress test, and pretty much for the entire duration of the test, Caden had continuous ectopic heartbeats. These are heartbeats that are considered outside of “normal” and in his case they are being triggered too soon. Not only was he in ectopy for the majority of the test he was also in bigeminy rhythm, which means that in addition to the funky heartbeats, he is having extra heart beats in between almost every single beat.
The test was ended when Caden became faint and started to list to one side of the treadmill. He was allowed to rest with his feet elevated and to drink several glasses of water. The electrophysiologist (we like to think of her as the “electricity doctor”) was present to read the test in real time and was able to see all of these issues as they occurred. Technology is wild!
She kept asking him if he could feel anything funky, to which he consistently replied “no”. This is concerning, because he could be having these episodes all the time and be none the wiser. He is now on limited activity until we decide a plan going forward.
Because there are so many different issues going on, and the funky heart rhythms are triggering from multiple areas of his heart, she stated that an ablation would not fix the problem. So ablation or heart cath is off the table.
She also stated that a change of medication may help for a short time, but is akin to putting a band-aid on a band-aid and not addressing the entire set of issues.
Not only is he having these funky rhythms, his truncal valve is leaking, the electricity in his heart is out of whack, but ALSO the conduit (fake plumbing) they placed during his last open heart surgery (in 2015) has stenosis, or narrowing which constricts blood flow. This is common in conduits such as his and those with his condition.
When this type of narrowing was originally explained to me years ago, they told me to picture a knit (or crocheted 😉) sweater. If you pull the two sleeves in opposite directions, the area where the sleeve meets the body gets narrowed and tight. That is exactly what’s happening in that artificial part in his heart. It appears that it may be time for him to get a new, larger part.
The doctor we met with yesterday is going to present his case to the rest of the cardiac team in Kansas City. Once a week they sit down and discuss patients that are regressing and/or showing signs of needing intervention. They review all of the recent monitor results, MRI results, stress test results, echocardiogram results, etc and collectively come to a decision for a path forward.
I should say that every time it has gotten to the point where Caden is being “presented to the team” they have gone ahead and sent him to surgery. In my gut I believe that a full open heart surgery is the next step. By replacing the 8-year-old conduit with a brand new, adult size conduit, the blood flow through his heart and, in turn, the rest of his body will increase and hopefully the leaky valve and the electric issues will be taken care of as well.
We will know more within a week or so, once the team meets and we have a plan in place. Caden is not thrilled at the prospect of yet another surgery, but he does remember how much better he felt after the last one. I am hoping that if they do go ahead with the surgery route (which will happen eventually one way or another) that he will come out feeling like a new young man.
I will continue to make updates to this post as I get them. Thank you for your thoughts, prayers, and words of encouragement! We appreciate it!
2023 Cardiology Updates
Caden has a rare, congenital heart defect called Truncus Arteriosus II and has had multiple open heart surgeries and other cardiac procedures throughout his 16 years.
Caden has regular cardiology checkups, typically every 6 months at the satellite clinic of Children’s Mercy here in Wichita. For all three of his open heart surgeries and his other actual procedures they have always sent him to the main campus of Children’s Mercy in downtown Kansas City.
Caden frequently leaves his Wichita cardiology appointments with a 72-hour heart monitor on him to get a snapshot of how his heart is functioning. Over the years he’s had many of these monitors placed, and the news has always come back more or less that there are small anomalies but nothing unexpected.
A couple of years ago the monitor picked up that he was having bouts of PVC’s (pre-ventricular contractions) and he was started on a medication to help prevent them. This time the monitor picked up several short spans of ventricular tachycardia over the 72-hour period. Which, if continues to happen for even a very short period of time, can be life threatening.
Because of these bouts of ventricular tachycardia his cardiologist has ordered a cardiac MRI and a cardiac stress test, both of which must be done in Kansas City. They were able to get him on the “short list” and instead of waiting until the original date of March 2024, they were able to get us in this week.
So on September 19th, Caden, my mom, and I will be heading up to Kansas City for these tests. Right now they are looking at two possible outcomes:
- A change of medication to help control them, which will require a stay in the hospital to monitor how his body reacts.
- An ablation via heart catheterization to go in remove some of the scar tissue within his heart from previous surgeries.
The great news is that as of right now, a fourth open heart surgery is NOT on the table.
After the tests we will meet with the electrophysiologist to go over the results and to decide which way to go from there.
The last open heart surgery Caden had was in August of 2015. It has been a full eight years and he has grown SO MUCH since. He was just going into third grade then, and he is now over 6 feet tall and a junior in high school. We have always known that he would need more interventions and/or more surgeries as he grows and his body matures, and as that scar tissue within his heart is stretched. It makes sense that the scar tissue could interfere with the electrophysiology and alter his heart function.
As you may have surmised, this is not my first rodeo. It is true that time does make things seem easier to handle (or at least more manageable) but it is also true that the moment you get not-so-great news it is easy to let the mind slip back to those early, uncertain days of his life.
In times like these I tend to focus even more on my work and on keeping my mind busy with other thoughts, rather than dwelling on the what-if’s and running through countless made up scenarios in my head.
I am taking my laptop to the hospital to keep my mind occupied while he’s back there. I am working now to make sure that the 2023 Tunisian Basics Cochet-Along is not disrupted and that square #11 is posted on Wednesday as scheduled. Although I do know that you would understand if I am a day or two late. 😉
I will keep you updated, and we all appreciate your thoughts, prayers, and support! ♥