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!

Another Good Day :)

Tyson had another good day and he was in a great, silly mood for most of the day.  He is resting well at nights and has a long nap in the afternoons too.
Today his INR level was a little low so we have adjusted his coumadin dose again and hope to get it right soon.  He remains on half a litre - quarter of a litre of oxygen to help him maintain sats in the 80s.  Once he can go through the night with no oxygen, I'm sure we will be on our way home.  (The earliest we can say would be Saturday as he is still on O2 right now.)
For now the IV line remains in as long as it stays in, (I was hoping it would "pop" out when he had his bath this morning but no such luck!) and he continues to get antibiotics through the IV as well as orally.  He is tolerating his heart medication well (the diuretic to help keep fluids away from his heart) and he says it tastes like Mentos :)  
He was in a very good mood all of today and we can see his personality coming back slowly.  As much as he is irritable and ornery when he's sick, we soon forget how difficult and challenging he can be once he starts to get back to his usual goofy self.
Please continue to keep him in your prayers, and pray that the wet cough goes away soon.  It'd be nice to know that this is a result of lingering pneumonia and not the start of a very difficult road for him.  
Mel:)

1 comment:

Aunt Rita and Uncle Jerry said...

WONDERFUL!! thanks so much for this blog...It sure helps us in our daily prayers for Tyson....THE fighter!