TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

MRI results


Tyson’s MRI results are in and the news isn’t as good as we had hoped.  We’re still trying to process what it all means exactly, and the news comes as a bit of a shock to us considering Tyson has been doing so well.

There are two significant changes from his last MRI to this one.  

First, there is more narrowing in his left pulmonary veins and his left pulmonary artery.  As a result, he has even less blood flow going into and coming out of his left lung than before.  His last MRI indicated a blood flow percentage of 18% from his left lung.  (Most healthy lungs have 45-55% blood flow.)  Tyson’s lung now has even less flow than that and with minimal drainage. When comparing the speed of blood flow between his right veins to his left veins, the blood flowing from his right pulmonary veins (his healthy lung) flow 8-10 times faster than the blood from his left lung. 

Secondly, the function of his heart has deteriorated some.  The doctors diagnose this by measuring the ventricle’s “ejection fraction.”  Ejection Fraction determines how well your heart pumps blood with each beat.  Most healthy hearts will have a left ventricular ejection fraction of 55-75% (because the left ventricle does most of the heart’s pumping) and you would be considered in heart failure if it got down to 40% or under.  With Tyson’s heart, because of the Tricuspid Atresia and Hypoplastic Right Ventricle, the left ventricle is the only ventricle that pumps so it would have an ejection fraction of about 60% at best.  Tyson’s heart is 47%, down from 57% on his last MRI.  This is a significant drop, not enough to consider him in heart failure, but enough that his function changed from ‘normal’ to ‘borderline.’   

So what’s next?  Tyson has another ECHO and appointment with his cardiologist again in November, at which time Dr McCrindle will have had ample time to discuss the findings with his team and decide what to do next.  When I asked him about how close we are to transplant, he said “we’re still a ways away.”  We are very thankful to hear that!  But the possibility of another surgery is not entirely out of the question.   He will have another MRI in 9-12 months, as long as he is relatively asymptomatic.

We are trying not to let this news get us down, knowing that sometimes we have to look past the test results and just enjoy the life that we see right in front of our eyes. He is super healthy right now, is LOVING Kindergarten, his antics make me laugh every single day (and sometimes his antics make me holler too!)  and we haven’t seen a decrease in his energy levels compared to before.   So we will keep our chins up and keep praising God for his goodness in Tyson’s life!

As always, we appreciate your prayers. 
Brian and Melissa and family








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