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!

August 5, 2009 - Echocardiogram

Tyson had an echocardiogram and ECG done today at Sick Kids and then he also saw his cardiologist Dr. McCrindle. This is the first full-study echo he has had done since he was last at Sick Kids for his Glenn operation in May. This was a sedate echo, which means no food past midnight, nothing to drink past 4:30 am, and they give him chloral hydrate to knock him out. He handled things quite well but was pretty grumpy, hungry and groggy after he woke up at 10 am. (He's now eating and sleeping fine again.)

Dr. McCrindle was positive about Tyson's heart function, the Glenn flow (the new blood flow resulting from the Glenn surgery) and he does not appear to be too concerned about the small pulmonary arteries and the "leaky" mitral valve. A lot of times if there is a leaky tricuspid valve, it can unravel after being patched during surgery, and can cause problems. The mitral valve doesn't usually cause too many problems. Another echo is scheduled for November 11 to keep an eye on things. That's THREE MONTHS away! No trips to Sick Kids for three entire months, the Lord willing!

The next stage of surgery, called the Fontan, will be when Tyson is somewhere between 18 months and 3 years old. It seems that every time we see Dr. McCrindle, he gives us a different idea of when surgery will be. (He also hesitated when we mentioned our trip to Florida by plane this coming fall - a trip that he consented too at our last appointment in June. We didn't let him change his original decision okaying the idea though, since the flights are already booked! LOL Dr. McCrindle also knows the Chief of Cardiology at the Paediatric Hospital in Orlando; this cardiologist actually trained under Dr. McCrindle! So they happen to know each other quite well.)

Tyson now weighs 19 pounds, 12 oz at 8 months old. He is gaining good weight, and seems to pretty much be keeping up with what our other kids weighed at this age. And they don't have a heart condition! He is also sitting well on his own, and although he is nowhere near crawling yet, he is starting to show some interest in moving around to grab toys that are out of reach. He'll get there when he is good and ready.

That's the update for this time.
Take care,
Brian and Mel:)