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 nine 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!

January Heart Cath

1:45 pm
Tyson finally made it into the cath lab at 12:15pm. Poor guy was very hungry, thirsty and past the point of grouchy, (nothing to eat since dinner last night, and some apple juice at 6am) but thankfully Brian is a wonderful Dad and was great with him :) We won't hear anything for a few hours yet. The cardiologist doing the cath forewarned us that he didn't think a fenestration closure would be possible given his pulmonary vein stenosis and high venous pressures. We completely expected this, but it's good for them to have a look around and re-assess his pressures and measurements anyway so they can discuss where to go from here. Keep praying :)

5:45 pm
Tyson is still in the cath lab; he should be in recovery very soon. His Fontan pressures are slightly lower now than they were in June. But they are still too high for fenestration closure. Most of this is caused by the stenosis (narrowing) in the left pulmonary veins. They did a test occlusion and watched his pressures for about an hour, and his pressures did increase too high. So if they permanently closed the hole it would affect his cardiac output. They also concluded that his cardiac output is slightly decreased since his last cath. I can't explain what they mean by that right now....no time. Given how well Tyson is doing at the moment, everyone agreed not to close the fenestration and put him at risk for even lower cardiac output. He is healthy now, let's not fix what isn't broken.

Dr VanArsdell (surgeon) happened to be walking by just as Dr McCrindle was giving us the news, and so they both agreed that Tyson will be discussed at Monday's surgical team meeting. Maybe there is something they can still do for the pulmonary veins, another open heart surgery possibly. They will see what the entire team thinks. If they don't fit him in the schedule for discussion for this coming Monday, it will be the following Monday. We may have to wait a few weeks to know for sure. But we are ok with that because, even though this isn't the best news, it was not at all unexpected. All day we prayed that God would give the cardiologists wisdom to know what is best for Tyson. We believe and trust that this is the best decision for Tyson for now. Even though it means another open heart.
We should be able to see him again soon. I miss him :( It's been an incredibly LONG day. Thanks for your prayers!

For those of you watching our children, please hug them for me....

3 comments:

Joanneke said...

We're praying! Keep us posted!

gerryandmargaret said...

We're praying too! Continue to put your trust in the LORD!

Anonymous said...

Thanks for the update...prays are being raised up over here too!
Love, MaryLynne