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!

Home from Sick Kids...but Ty still has the JP

Hi all, really quick update: Thursday's number was 16cc. Today is very minimal too. Chest x-rays reveal that Ty's lungs are "prestine" (very clear.) Instead of pulling the JP and weaning him off steroids, they've decided to stop steroids abruptly (perfectly safe since he's only been on them for one week.) Then if there is no re accumulation of fluid between now and Monday, we go back to Sick Kids on Monday for a tube pull. It's better to err on the side of caution, because if the JP gets pulled too early and the fluid re accumulates, having to reinsert a chest tube is a HUGE step backwards, and would be very painful for Tyson (and us!)

We are happy with this decision. A prestine x-ray is waaaay more important at this time than a JP pull :) It means another trip to Sick Kids, but at least we'll be confident that Tyson is ready to be done with the JP for good.

Hope you all have a HAPPY NEW YEAR! We are pretty excited to be celebrating together as a family :)

GOD IS GOOD!

Mel:)

3 comments:

Joanneke said...

HAPPY NEW YEAR!!!!!

Tanya said...

Awesome news Mel! Happy New Year to you! Praying that things continue to go well and the tube will come out on Monday and you will come home. Hope to see you soon. T

Jen said...

YAH!!!!! That's great news Mel!! Happy New Year:)
R&J