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 AGAIN!!!!! Wednesday, May 27, 2009

Give thanks to the Lord, for He is good.
His love endures forever.
Psalm 136:1

Yay! We finally made it home yesterday afternoon. The doctors were happy with Tyson's progress so they released us. We are trying to settle back into the swing of things. Despite Tyson being awake all night in the hospital on Monday and Tuesday night, he had an OK night last night...probably because it is a bit darker in our house. He is still not as strong as he used to be and most likely will require some physiotherapy at home to rebuild his muscles. The surgery has interfered with the strength of his head and neck muscles, shoulder muscles, and pec muscles so he is not quite as sturdy as he used to be. We will also be receiving home care 3 times a week to keep an eye on his heart function (like heart rate, respirations) and the state of his incision. He is still not eating quite as much as he used to so we have to keep a close eye on that, but overall he seems happy to be home. And we are too!

4 comments:

Sara said...

Mel and Jay said...

WOW!!! That looks like MY writing...heeheehee!!! (It was ALL Jay...)

Joanneke said...

Hi Brian and Mel and family!
So glad to hear you're home already! Once he was extubated, things really improved fast, didn't they? We pray that things will continue to go well, and that you can settle into a routine again soon!
All the best!
Joanneke

willowsprite said...

Yay! Go Tyson! :)
Always praying for your family...