Hi everyone!

Thought I'd update here for a change. Tucker had an echo and appointment today with Dr. Chu.  He did SO well with his echo!!! Tucker's echo has been fairly stable since his open heart surgery almost 3 years ago. He did wear through his cadaver pulmonary valve fairly quickly, which isn't uncommon. The homograft tissue (cadaver valve) doesn't last forever and eventually gets stiff and calcifies. At this point, the homograft is simply a tube with no actual valve in it but as long as that tube remains pliable, we should be ok.  Over time, Ebstein's Anomaly can also cause an enlargement of the right atria (the right upper chamber). Tucker's is large, but hasn't caused any arrhythmias or other complications recently, so again, we are ok.  Tuck did complain of dizziness quite frequently a couple of weeks ago so he wore a heart monitor which didn't show any funny rhythms but if it did, we would first try medications to tame the irregular rhythms. Everything else on his echo, including his Glenn, looked stable.

Ultimately, we have to weight the options to determine when it is best to do another repair on Tucker.  Tucker's heart needs a lot of work. With the next OHS, the cardiologists hope to do a massive repair that would include:

1. Closing his ASD, which is the hole in-between the top chambers of his heart

2. Performing a Cone Procedure which means peeling his tricuspid valve off of his right ventricular wall. This would put the valve where it is intended to be but they aren't even sure they can do this because his valve has stenosis or stiffness that may make this difficult.

3. Replace his pulmonary valve with another homograft. Ideally, our goal is a size 14 homograft because then, the valve can be replaced in the future through cardiac cath as opposed to OHS.

4. Trim down the size of his right atria. His right atria is enlarged so they need to trim it down in size to prevent future complications like arrhythmias, but they are messing around near the electrical system of the heart in this area and have to be careful not to knock out his intrinsic electrical activity. They tell me they are really good at not screwing this up...but I still ask the 'what ifs.' 

5. Last, they may perform a MAZE procedure to knock out Tucker's extra electrical pathways that have caused supraventricular tachycardia (Wolfe Parkinson White). They know where the spot is because they have triggered tachycardia in his cardiac cath so hopefully they can just deal with it right away and be done with it. 

The great news is that Mayo and Children's cardiologists started working together so Dr. Dearani from Mayo, one of the countries most studied Ebstein's surgeons, would assist/perform the surgery with the team at Children's. The cardiologists and us are in agreement that bringing Tornado Tucker in for an open heart surgery now would be a terrible idea. He would be a difficult patient! And again, we would like him big enough to fit a size 14 homograft. Our ultimate goal is to try to hold him off until at least 5-years-old.  He will likely need a cardiac MRI prior to any procedure to determine a final game plan. Sending my 5-year-old away to have his heart stopped and rearranged sounds no more appealing than doing it now but I know it is best.  It's scary to think he will have some level of understanding the next time we send him into surgery. 

Until then, we continue on! As far as I can tell, we all live in Tucker's world, so he will continue to run the show and do it will all the sass and determination he can. My goal is to keep him healthy and active, which is proving quite difficult during influenza and RSV season amidst our third year of a pandemic, but we keep trucking through!!

Thank you all for your continued love and support! We appreciate all of you!

Britt