by I haven’t posted an update like I had initially planned, so people I run into have been asking how AJs heart cath went on Wednesday. My response is always something like this:
“Oh! They just put a stent in his aorta and ballooned the stent he already had in his left pulmonary artery – but everything is great!”
Just. Everything is great.
Like it’s no big deal.
I had shared on Facebook that we had to wait longer than expected due to an urgent case that was bumped in before us. Much of the morning was spent waiting for our turn. It wasn’t something that we let bother us. If someone needs a heart cath urgently, they definitely need it more than we do. I’d rather sit and wait patiently than fill that space with negative energy.
During our wait, Help-A-Heart was amazing and sent us lunch. On procedure days we have a tendency to get caught up in the activity and forget to feed ourselves. I absolutely love their initiative and mission.
AJ did fantastic during the wait, even if it meant he had his i-pad for a much longer time than we typically like. We tried to keep him awake, but ultimately he fell asleep when I curled up with him for a nap, which ended up ending abruptly when it became his turn to head in.
While AJ is in the cath lab we sit in the waiting room. Periodically the girl at the front desk would come over with an update.
“He’s doing great. They have him sedated and a second IV has been placed.”
A little later – “He’s doing great. They’re checking the pressures in his heart.”
Aaron was dozing on the waiting room chair (I’m seriously jealous of his ability to just sleep anywhere) and I was keeping myself distracted on my phone when she came over again.
“He’s still doing great, but they found some narrowing in his aorta and are going to put a stent in it. I’m sorry, I know that wasn’t expected.”
She was right, it wasn’t expected. Truthfully though, it wasn’t really unexpected either. AJ has had a narrowing (also called a gradient) in his aorta for some time. During his last heart cath they ballooned it in hopes it would be enough to keep it open.
I remember looking at her and saying “No need to be sorry! Thanks for the update” and going back to my phone and continuing on with my distraction. I didn’t really give it much of a second thought.
It’s crazy how much this medically complex lifestyle has skewed my reality of what is “normal”. In case you’re wondering, I’ve had to remind myself lately that:
- Your kid needing an IV isn’t “normal”.
- Your 4-year-old being so used to having IV’s placed that he sits still and doesn’t need to be held down or fight being poked four times to get said IV isn’t “normal”.
- Your kid needing sedation isn’t “normal”, let alone needing specialty sedation because of his heart.
- Sending your kid to the cath lab isn’t “normal”.
- Having a blasé reaction to the news that your kid needed a stent put in his aorta during a heart cath isn’t “normal”.
- Sitting down with your doctor after the cath is over and actually understanding the pictures on the screen before he explains them isn’t “normal”.
I could keep going, but you get the point. Sometimes I forget how far into this world we are.
As far as cath results go though, they truly were really pretty fantastic, all things considered. His cath procedures are how we monitor his progress towards being eligible for and/or being at the point of needing his next open heart surgery.
High pressures in AJ’s lungs have been one of our barriers to his next open heart surgery. At his last cath, the pressure numbers had dropped pretty remarkably, and they’ve dropped even further this time. His pressures are now in an acceptable range to be considered for his Fontan procedure, which is amazing.
One of his other barriers is the number of medications he has been on for those pressures. A few months ago we discontinued one of his medications (bosentan/Tracleer). This cath and his continued improvement tell us that he is truly doing fine without that medication.
Now because those numbers were so much lower, we are going to try weaning his last remaining pulmonary hypertension medication — sildenafil. We started that wean this weekend. For the next month, he will be on a half dose and then we will discontinue it if everything looks good at his next cardiology appointment.
He did need the new stent added and additional ballooning on his existing stent. Pictures are included below. The first image shows his pulmonary arteries. You can see where his left pulmonary artery isn’t as large as his right and is no longer filling the stent, which is why they ballooned it again to fill it back out.
The second image shows his aorta before the stent was placed. You can definitely see how it’s fatter at the top and then is skinnier and ultimately returns to the same width as it was above. That’s why it was decided to place a stent in there to make sure blood could flow evenly throughout.
He did also have some collaterals (small additional blood vessels his body has formed to try to accommodate for his lower oxygen flow). Typically they like to close those off, but ultimately they weren’t significant enough to need to be addressed during this cath and for now, the plan is to continue to monitor them and maybe address it in the future.
So yes, he did need to have some interventions done… and yes, they’re a pretty big deal. Ultimately though the news was positive and continues to show that he is moving in the right direction, and we are incredibly thankful.
Recovery afterward was honestly harder than the wait before. Because they had to put a stent in, they used a larger catheter to get into his heart via his groin in both an artery and a vein. As a result, the risk of bleeding is higher. So AJ had to lay flat for 6 hours after the bleeding stopped.
By the time his cath was done and he was on the floor it was 8 PM. He had to remain flat on his back for another 4 hours until midnight. He had over 6 hours of iPad time earlier in the day and was really pretty much over everything. It took a lot of work to keep him busy until midnight.
They do have very cool pressure dressings that I realized I haven’t shared before. They place the dressing over the entrance site and inflate the window with air. That keeps pressure held on the site to help stop bleeding, but also allows the team to still be able to see the site itself. Every hour they deflate the dressing by removing the air and check to see how the site is doing and to see if the bleeding has stopped. Then they put the air back in — using a little less air (and therefore a little less pressure) each time until they ultimately leave it deflated.
We’ve had these dressings for his last few caths, but I still think they’re amazing. It’s a stark contrast to how things worked for his very first couple of caths where we would need to remove dressings to check for bleeding and we had to manually hold pressure on his leg.
Once he was free to move from his back he immediately flipped over to his stomach but continued to fight sleep until somewhere around 3 AM. He was tired but was understandably not wanting to close his eyes again. Ultimately the only thing that worked was putting his iPad on an ocean wave sound and locking the screen so he couldn’t change it. I give SO many props to the families who have done this before technology was around. I have no idea how we would get him to sit still if it weren’t for the distraction that his iPad is able to provide!
Of course, he needed more antibiotics around 4 AM, and by 8 AM his room was bustling with nurses doing handoffs for the shift change, meds, and the prep work needed to get his breathing treatments done, an x-ray and an echo so that we could go home. Exhausted does not even begin to cover how both he and I were feeling in the morning.
AJ was calm and patient for his echo. He usually is. He knows that they aren’t painful and doesn’t usually fight whoever is doing them, even gladly arching his head back so they can get all of the good angles. Again though, iPad placement helps.
His x-ray was a different story. If you’ve ever seen those images of pediatric x-rays that looks like the baby is in a blender, it’s very similar – except he had to do it lying down and velcroed to a wooden board since he’s so big. He freaked out, screamed, cried, and needed more oxygen. We had to move as quickly as we could to just get the images and get him out of the x-ray room. Thankfully as soon as he was out of the restraints he was fine and was extra happy when he realized that was the last thing we had to do before we could be discharged and head home.
The ride home was uneventful, and once we did get home he sprawled out on the floor and flailed around, enjoying his freedom. After a few hours of making sure everything was just as he left it in the house, he crawled onto his trampoline where grandma had set his pillow and blanket and went to sleep — all on his own. And so did grandma, and so did mom.
Cath trips are exhausting, for everyone, but ultimately we are thankful for the results of this trip and are praying that it truly is the right time to make additional adjustments to his meds. Being able to come off of his sildenafil will not only be one step closer to possibly being eligible for his next surgery, but will save us all a lot of headaches from trying to get the specialty medication refills and will be three fewer syringes of medication he will have to get daily. It also puts us one step closer to considering coming down on his oxygen needs as well, which is pretty amazing to think about.
These are all big steps for our (little) big boy.
