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!

Cardiology Update



Tyson has his regular ECHO, ECG, and cardiologist appointment on June 18th.  By the looks of his ECHO, the same old concerns are there, but no new issues have arisen.  We love news like that!  The cardiologist had originally said back in October that Tyson would need another MRI in 9-12 months, but now he’s said let’s discuss the MRI after his next ECHO and cardiology appointment in November.  We love this news even more! 

Now before you go thinking we can rejoice about not having to go to Sick Kids for another six months ;) the Sick Kids ENT department called and we have an appointment to see an ENT there on July 14th.  This will be an initial consultation, after which they will make a decision about the need for cauterization.  While it's true that Tyson hasn't had a single nosebleed since his last 911 nosebleed, and it was likely caused by the dry air from his last hospital admission it's still a good idea to be seen by an ENT to make sure it's not going to happen again.  His nosebleeds are more frequent in the dry winter season, so we definitely want to take this ENT appointment now so that we're not stuck on a waiting list in the winter months.

Tyson also saw the Dentist at Sick Kids on the same day in June, and he has no new cavities!   In fact, she even noticed that Tyson has his first wiggly tooth.  Tyson is very excited about that!  (Me, I'm just wondering how much he's going to bleed!  Oy! Boys and blood-thinners just don't belong together ;)   

On Thursday, June 19 Tyson graduated from Kindergarten!  


When Tyson was a baby and someone said to me, "My son is going to go to school with your son...."  or "My daughter is going to be in Tyson's class...." in the back of my mind I always breathed a silent prayer, "The LORD willing."  Every time someone speaks of his future I pray, "The LORD willing."

I had never let my mind get that far ahead.  I had never let myself imagine sending him off to school.  I just prayed we would be able to have that opportunity.  I guess that's all part of taking things one day at a time - you never look to far ahead.  And now, not only did we have this blessed opportunity to send him to school, but he GRADUATED from Kindergarten :)  Praise God from Whom all blessings flow!
 

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