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!

Upcoming Heart Cath: August 5, 2010

And Hezeikiah prayed to the Lord: "O LORD, God of Israel, enthroned between the cherubim, You alone are God over all the kingdoms of the earth. You have made heaven and earth. Give ear, O LORD, and hear; open Your eyes, O LORD, and see." II Kings 19: 15, 16

Why is it that when I teach my children that they must put their trust in God for all things, it seems so easy, but when I actually have to put my words into practise, I just don't think I can do it? It's a good thing that it's not us who does it, but God Who carries us through it!
Today at lunch time Kenya and I read the story of Hezekiah and how he cried out to God when he was feeling alone and afraid. We talked about how we can go to God for all things, and how God hears our prayers even when we pray quietly in our heart.
Lately there have been a lot of quiet prayers offered up to God. On the weekend we received word that Tyson's heart catheterization has been scheduled for Thursday, August 5, 2010, with the pre-cath appt being the day before.
To remind you all, a heart catheterization can be both investigational and interventional. People who need a type of heart surgery like having stents put in, or need balloon angioplasty, have it done through a heart catheterization. Tyson's heart cath is investigational, in preparation for his Fontan surgery this year. The heart cath involves sending a catheter into his heart through the artery in his groin. The catheter is carefully threaded through the artery to Tyson's heart and then a dye called "contrast" is injected into his heart. The cardiologists can then measure heart pressures, oxygen levels, and gain information on the structure and function of the heart in preparation for his Fontan surgery. Tyson will be intubated for the procedure and will also be under general anesthetic, with the possibility of an overnight stay at Sick Kids, depending on how well he handles it.
This is another one of those procedures that is routine to the cardiologists at Sick Kids, but to us, it is a little nerve-wracking. Handing Tyson over to the anethetist before the procedure is difficult for me because there are risks involved in the procedure. Of course we try not to think about the risks, but any quick google of "heart catheterization risks" will give you an idea of what we are talking about.
Anyway, we can learn a lot from King Hezekiah and when we are sad or afraid, we cry out to the Lord for help. This is just another step in preparation for Tyson's next open-heart surgery. I guess having the heart cath scheduled has just really made things sink in. We're one step closer to the big surgery, and one step closer to having to do this all over again!
With that said, we trust that all things are in God's hands. He has carried us through it all before, and He can do it again. "If He brings you to it, He will bring you through it."
On more exciting notes, Tyson is doing very well. He is loving this beautiful weather and just loves spending time outside. He toddles around outside, following his sister and brothers around, copying them and getting right in there when the older boys play hockey or soccer. He isn't talking a whole lot yet, he does say a few words, and he certainly knows how to get what he wants. And if he's anything like my other kids, the terrible twos should be starting soon. Yeehaw :)
It's such a blessing to see how far he has come in the past year and every day he gets extra tight squeezes from me, just because he's here and he's healthy. Thank God for sparing him and gracing our lives with his presence!
Mel:)

1 comment:

willowsprite said...

I haven't read your blog in a while, I figured I'd come by for an update! I can't imagine how tough this all must be. But, like you said, He will carry you through, no matter what.
Thinking of you,
Sherri