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Cardiology Update 2023

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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.

Caden heart hook home update

UPDATE (October 23rd, 2023)

Whew! This last week has been a whirlwind. The procedure went great on Wednesday. They took him back around 8:30 am and finished around 4:30 pm. A long and exhausting day of waiting for updates. They kept him overnight for observation and released him Thursday morning after an uneventful evening. Great news!

They ended up treating two spots inside his heart. The first was in the right ventricle (lower part of the heart) and the second was higher, toward the back of the Pulmonary Artery, where the conduit (“fake plumbing”) is located and where the bulk of his scar tissue is from his previous open heart surgeries.

While he was under, they inserted a permanent, subcutaneous heart monitor that connects via Bluetooth to an app on his phone. The doctors can monitor his heart rate and rhythm at any point in time remotely. If he has symptoms or funky beats, the monitor will automatically start recording and send an alert to the doctor so they can keep an eye on him. This monitor will last between 3 – 4 years and is very small in size. It can be removed if no longer needed, or replaced when the time comes.

Since coming home Caden has been tired, sore, and a bit cranky. Which is all understandable, of course. With each new day he feels better and better, and he is back to school today and ready to start his very FIRST job later this week.

I am eager to see how he feels going forward, and what the tests will reveal when we go for his follow-up appointment in Wichita at the end of November.

Hopefully everything looks great and he’s got another several years before the conduit needs to be replaced.

Thank you for your thoughts, prayers, and support!

UPDATE (October 18th, 2023)

9:30 am – The procedure has started. They expect it to last most of the day and I will continue to make updates here as they come in.

10:05 am – First update from the team: Caden is fully asleep, IVs are in, and they are starting the actual mapping of his heart now.

11:30 am – Continuing to map, vital signs are stable.

12:20 – Mapping is complete, currently trying to induce arrhythmia.

1:35 pm – They have found some funky spots and are starting to treat them now (ablation).

3:10 pm – Still treating… going well.

3:40 pm – Doing some post testing. Will be placing a permanent, internal heart monitor next.

4:25 pm – They just finished and the dr will be out to consult shortly.

5:45 pm – He is in a regular room! Groggy but awake. Will update will full details of the procedure after spending some time with him.

Thursday, October 19th – he has been discharged!! 🙌🏻

UPDATE (October 13th, 2023)

Today we had the pre-admission visit with the team in KC. Thankfully we were able to do this online and everything is set and ready to go for the ablation on the 18th.

On Tuesday, October 17th, we will head up to Kansas City and get settled, hopefully in the Ronald McDonald House. Bright and early on Wednesday morning we will head to the hospital to get checked in for the actual procedure.

They will give him the good meds to calm his nerves, then take him back, get anesthesia going, and get in there to find those funky spots and eradicate them.

I will keep this blog post updated as needed going forward. I appreciate you, as always!

UPDATE (September 27th, 2023)

Yesterday we got the call from the cardiology team and we have a plan set for going forward.

The good news is that Caden’s heart structure and function (apart from the electrical issues) has not worsened enough for him to be a candidate for surgery quite yet. She did say that when he does require another surgery they will replace the conduit (the fake plumbing in his heart), address the leaking of his Truncal valve, and repair the Truncal root. But first they are going to narrow down their focus to only the electrical issues causing the funky heartbeats.

Within a month or so we will head back up to Kansas City for an EP (electrophysiology) study. This is similar to a heart cath in that they go in through the groin and up inside the heart. Once there, they will try to pinpoint the areas of concern (from what she said there are several).

Once pinpointed, they will treat those areas via ablation to intentionally cause scarring thus stopping the spark of the funky rhythms. They will most likely keep him overnight to watch how his heart reacts to this treatment. Caden has always had a hard time getting his rhythms under control after a procedure so that does scare me, but with medicine and close monitoring they always get him straightened out and I have faith that they will do the same now.

One thing I know for sure is that he is in the best possible hands and I trust the doctors, the process, and the outcome.

Caden is more upset about this procedure than the possible surgery, and I hate that for him. What he doesn’t remember is that he’s done something similar to this before and it will all be OK.

We should know more and have a date for the procedure within a few days to a week. I will continue to update this post as more information comes in.

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

As you may know, my oldest son, Caden, is the reason for the HEART in “Heart Hook Home”. Read more about Caden’s early years here.

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:

  1. A change of medication to help control them, which will require a stay in the hospital to monitor how his body reacts.
  2. 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! ♥

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19 Comments

  1. The 18th of October 2023 my son turned 19. As a mum I can't imagine how worrying all this must be for you and your family. Your son is such a brave young man. Well done Caden :) Sending prayers & love to you all <3
  2. Ashlea that is absolutely amazing about the heart monitor and the success of the surgery. I am so thankful! And back to school AND his first job!! Outstanding! He will continue to be blessed as he is a strong one. Gods bless.
  3. ❤️ May everything go well for Caden and your family, I will be thinking of you and praying for the best.
  4. Ashlea, thanks for sharing, May the Lord bless Caden’s cardiology team with wisdom and knowledge to make right decisions regarding his care and treatment, and continue to give you faith that move mountains. May He bless Caden with peace that surpasses all understanding. This is my prayer for you all.
  5. Praying for Caden and all of you. Any surgery is scary but this tops them all!! Your crochet family loves you and prays for a successful outcome!❤️
  6. You are one strong mama. Keeping you all in prayer. Praying for the doctors working with your son also. Speedy recovery for Caden.
  7. You are one bada$$ momma! Seriously, I can't beging to imagine how you are feeling right now. I know what a wreck I was when my dad was dealing with a badly damaged heart 30 years after radiation from cancer treatments. But this, this is your baby. I might also mention I was a wreck when my now 21 year old had to have a knee operation to replace a tendon, not the ACL, it was a different one, but then they had to shave the cavity where the knee cap sits because that was also too shallow. That was an outpatient surgery, but the only time he'd ever undergone any anesthesia. I am praying for you and your son. And a whole nother set of prayers for the rest of your family too. It has to be hard on all of you. Take your time, we will still be here, family comes first, always. God Bless
  8. I hope all goes well, and the doctors work their magic. As a mom of a Tetralogy of Fallot baby I understand that you want to push the surgery out as far as possible. My son is 33 and a Dad of two, and was one of the first few who had conduits put in their bodies. The doctors can work miracles these days and the technology has come so far. My son will need to have his conduit replace also buy his last one was when he was fifteen, his fifth open heart. I hope that your son's will last super long too. Many blessing and prayers sent your way for good news, and doctors healing hands work magic. Warn your son, my son has a hard time going to a Peds Cardiologist at the age of 33. LOL as they don't have doctors that treat CHD.
  9. You are both strong and know that all will work to the betterment of Caden. It is not fun to look forward to more Surgery, but thankful that they can do what he needs and have it be successful for him to have a fulfilling life! Prays going up for your whole family Ashlea! ❤️
  10. God bless your son, you and all your family. You have MEGA PRAYERS coming your way I pray your son has an easy time and a speedy recovery ❤️‍.
  11. My middle child had so many illnesses, from 3 mo. and now at 64, has had a total of 31 surgeries. I say this so you know when I say I know what you are going through, that I've been there. I'll put your dear son on my prayer list. I personally have had one open heart surgery and I can't imagine having to go through that 3 times. May God give you and your son His peace and strength as you continue this journey with him.
  12. Ashlea, you’ve been through a lot with your Caden. I’ll keep you both in prayer this week as you face new challenges. May the Lord bring indescribable peace.
  13. Ashlea, Hugs to you, Caden, and the rest of the family. I will be lifting him up in prayer and hope for a simple easy outcome! May God surround him with his healing angels and get him through this next chapter in his story. Crochet away! Hugs, Joan