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!

Day Three at Sick Kids - Wednesday, December 3, 2008

Another update for you all. Tyson is scheduled for surgery THURSDAY MORNING AT 8AM! Please remember him in your prayers and pray that God will guide the hands of his surgeons, that the surgery may have the desired results.
Tyson went to the IGT (Image Guided Therapy) this afternoon to have his PICC line inserted. PICC stands for Peripherally Inserted Central Catheter. It is basically a catheter that goes up from a vein in his arm and ends in a large vein just above his heart. It is a special intravenous line that is used when children need IV for a long period of time, such as after a major surgery. The doctors use the PICC line to administer medications, IV fluids, or to have blood samples taken. It prevents them from having to poke Tyson every time he needs blood work done, which occurs a lot after surgery. We are happy to have this PICC line inserted because Tyson really is sick of being poked and prodded for blood!


Surgery will begin at 8 am and usually lasts about 5-7 hours, although it is possible that it could take longer. Brian's parents will be joining us for the day for support and we would appreciate if you could please pray that God will give us patience to endure the emotions of the day, and that God will bless the outcome.
We have decided to go with the Norwood surgery, the open heart surgery. The reason we chose this option is because the cardiologist said it has been around a lot longer and the surgeons have performed it many, many times with great success. The other option was a less invasive surgery but it is a relatively new procedure. The recovery time for both options was pretty much the same, but the Norwood surgery would accomplish more in one surgery than the Hybrid surgery. We had a hard time deciding because we are not the experts when it comes to congenital heart disease, but we feel peace with the decision we have made. If one surgery was far less superior than the other, the surgeons would not have given us an option but would have proceeded how they felt. But either way, something has to be done because Tyson cannot continue living with the way his heart is now.
We are praying that tomorrow's update will bring good news.
Till then,
Brian, Mel and Tyson

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