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!

A Quick Update - June 11, 2010


Just a really quick update on Tyson. His appointment with the cardiologist on May 26 went very well. They are impressed with his growth and development and are planning to proceed with steps for his next surgery, coming up sometime this fall. The heart cath is booked for August 5th with pre-op (pre-cath) the day before that. Once they have the results from this heart cath, Tyson's surgical team will gather the information and decide when is a good time to fit him into the surgery schedule. Dr. VanArsdell will be doing the surgery, as did he the previous two.
Tyson also had a speech assessment done with the WeeTalk program this week. I had some concerns a few months ago regarding his speech, because he would not even try to repeat words at all. This is no longer a concern because in the past few weeks, his vocab has expanded to over 30 words! Of course, "no" is the one most frequently used! :) We decided to keep the appointment however, and have him assessed anyway. The speech-languauge pathologist said he is making good progress and his speech is coming along. He does appear to be mildly behind, mainly based on how he does not make a whole lot of consonant sounds yet, especially at the end of his words. She does not recommend speech therapy at this time. However, Tyson will be reassessed in September and every 3 or 4 months afterwards to make sure he is progressing well. If he does end up needing the therapy when he is a bit older, at least he will be entered into their system already and he will not need to be on the waiting list.
Tyson is now an 18 month old who is running around like crazy, and he hasn't really been as clumsy lately. He only has one bruise on his head at this time, compared to the few he usually has on most days. He is a curious little guy and makes a mess wherever he goes, but he doesn't seem to get into TOO much trouble yet. He doesn't climb up on things yet and he can't do annoying things like take his shoes and socks off yet. His main interests these days are watching the Aukemas go back and forth on the tractors, mooing (or barking) at the cows across the road, playing with his John Deere tractors, and of course, hockey. So he's like his brothers in many ways!
That's all for now, thanks for checking in on the little guy!
Mel:)