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!

Pre-Cath Appointment, January 6, 2012

Tyson had his pre-cath appointment today at Sick Kids and all went well. He is scheduled for second case on Monday morning, at 10am. He will have an MRI first to assess the status of the pulmonary veins in his left lung, and then while he is under the same anaesthesia and intubation, he will proceed to the cath lab for his heart catheterization. Again, the cath is to attempt a fenestration closure, to examine how his Fontan circulation is working, and to measure his heart and lung pressures. From this, we hope to learn what the next step will be for Tyson surgically. The entire process will take 2.5 - 3 hours roughly, and then he will have a minimum of 4-6 hours recovery, with the possibility of an overnight stay if fenestration closure is successful.
Please continue to keep Tyson and our family in your prayers. Please pray that Tyson will remain healthy and ready for this procedure, that his heart & lung pressures are low enough for him to have the fenestration closure. Please also pray that the pulmonary vein stenosis has not progressed but that the veins remain stable, so we can hold off on any talk of heart & lung transplant in the near future.
(When praying for our family, please keep our other children in mind as well. They deal with more anxieties than most kids their ages, and our oldest especially understands more and worries more than he should have to at his age.) Our comfort is knowing that God is in control of every situation and we pray for His peace to guard our hearts and minds!
Tyson is coping with things very well. The Child Life Specialists at Sick Kids are wonderful at explaining things to him at an age-appropriate level and he seems very comfortable with what is going to happen. He even said on the way home today that he likes Sick Kids because it's fun. We feel so blessed to have an amazing Children's Hospital that even a three year old boy is not scared to go there!
Thank-you also to those who are looking after our other three blessed cherubs while we travel back and forth to Sick Kids for the pre-cath appointment and for the MRI & cath procedures! It's great to know our kids are happy and in good hands!
Brian and Mel

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