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!

Tyson's New Surgery Date

Hello to everyone once again. I hope everyone enjoyed the beautiful sunshine this week!

On Thursday we went back to Sick Kids for a check-up and Tyson's pneumonia has cleared up quite nicely. You'd barely know he had anything last week, as everything seems to be cleared up and his chest and lungs sound completely clear. He remains on the antibiotics for another few days to make sure the bug is killed.
He did, however, lose a bit of weight from his discharge day until now. I am a little concerned about this but do realize that, like any of us, it does take time to regain a full appetite. I am borrowing a baby weigh scale again from Community Care Access Centre to keep a close eye on things. Hopefully he can gain some of the weight back that he lost as he needs to keep strong for his next surgery.

We have another date for surgery. It's Tuesday, May 12, 2009. Hopefully things don't get changed again; we sure have had enough waiting! Tyson's echocardiogram last week showed that from a heart perspective, he is doing fine and the surgery can wait till May. From a respiratory perspective, the doctors would like Tyson's lungs to be 100% healed before going in to the surgery. If he goes into surgery 100% healthy, he will have a shorter recovery time than if they operated on him while still a little sick.
The expected recovery time for the Glenn surgery is 5-7 days. This is just a general guideline, based on how other healthy babies have recovered. We never know what to expect, of course, but as long as Tyson progresses and heals as he did the first time, one week or so is a realistic timeline.

Thanks for keeping us in your prayers. We pray that Tyson will remain healthy until this surgery date and that all will go according to God's will.
Brian and Mel:)

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