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!

Cath Day August 5, 2010 - update # 2

I am going to try to make this short and sweet because I am at my Mom's and I really want to get home to see my other kids. (5:44 pm)
Tyson's heart cath went on without any major complications and he was discharged from the hospital by 3:45 pm. Right in time for rush hour traffic :) The MRI perfromed before the cath procedure gave a very good picture of the heart, and it revealed that they could indeed insert the cath through a vein, not an artery. Which is why we were able to go home after 4 hours observation, not 6 hours. YAY!
The collateral vessel that is growing did not need to be coiled at this time since it has grown down towards the bottom of the heart, which is where they will be performing surgery in a few months. So no need to repair at this time. The leaky mitral valve which was patched closed during the Glen has stayed the same, no further leaking.
However, the cardiologist said they found something that surprised them today. (Ech, I hate hearing that!) Tyson's pulmonary veins (which were discovered to be small during his Glen surgery in May 2009) are actually smaller now than they were before. This means they cannot complete the Fontan surgery until these veins are fixed. The cardiologist today is hopeful that it can be fixed at the same time as the Fontan, (immediately before the Fontan procedure, but during the same open-heart operation.) BUT... I remember Ty's surgeon saying last May that there was a possibility that they would have to do an additional surgery before the Fontan to fix this problem. Right now we know nothing more than that. The info from today's MRI and cath will be sent to Ty's head cardiologist, who will discuss the findings with the surgical team, and from there they will come up with a date for surgery as well as a plan for if the pulmonary veins problem and the Fontan completion can be solved in one surgery or two. Either way, the small veins most likely will complicate the Fontan recovery.
Despite this possible setback, I am reminded of the lyrics to one of Robin Mark's songs:
"All is well with my soul,
He is God, in control
I know not all His plans
But I know, I'm in his hands."
We are comforted that even though we don't know what tomorrow brings, we know Who holds tomorrow and that He is always in control!
Mel:)

1 comment:

Joanneke said...

Hi Kottelenberg family,
I was hoping there would be an update! I'm glad to hear the day surgery went well, and we hope and pray that the next surgery will go smoothly too. Knowing that God is in control brings so much comfort!!