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!

Sunday, October 3, 2010

"Wait for the LORD;
Be strong and take heart
and wait for the LORD."
Psalm 27: 14
Sometimes life requires us to make difficult decisions, and we just have to trust God and wait on Him. When we trust Him, pray to Him, and ask for His will to be done, we can feel peace in the decisions we make.
On Thursday Sick Kids called us with a surgical opening for this coming Tuesday, October 5th. As much as we really want to have Tyson have his surgery while he is still healthy, we had to make a difficult choice and turn it down this time...and continue to wait for the scheduled date of November 18th.
With Rob and Francine's wedding coming up this Friday, it just wouldn't work for us. I just don't feel that I would be emotionally stable enough to attend the wedding with Tyson back at Sick Kids in Intensive Care. And since I am a bridesmaid, and Kenya is the flowergirl, we definintely want to enjoy the day :)
Fortunately, the surgical co-ordinator did say that she would most likely be able to call again and fit us in sooner than Nov. 18th. (No promises...but we are hoping!!) She is having a difficult time filling Dr. VanArsdell's time slots, since many people are having to cancel their surgeries due to colds/flus, or they haven't fulfilled all their pre-op pre-requisites. (like dental appointments - to make sure there are no absesses or infections that would act up post-op, etc. Tyson has seen the dentist already and he's good to go!)
So far this fall, Tyson has been very healthy. That is why we are anxious to get this party started and have his surgery while he is so strong. We are praying that he can still be fit in earlier than Nov. 18th, but we are at peace that if another opportunity does not come up, we've still made the right decision. Besides, Brian also strongly feels that he is not quite ready for Tyson to have this surgery this week yet. We would love to have a nice weekend together at the wedding with the family (except Tyson, who will be spending quality time with my parents) and have a nice Thanksgiving weekend together. Once we have a nice weekend together, they can bring on any date, we'll be ready! In our heads we've always thought "any time after the wedding..."
So now, we continue to wait until the LORD tells us it's time. If that is November 18th, so be it :)
Many people have been mentioning that they are keeping us in their prayers and for this we are so grateful. "The prayer of a righteous man is powerful and effective." James 5:16
If you wonder what specifically you can pray for, we have a list of requests that we'd like you to bring before God:
1) Please pray for Tyson's continued health in the next number of weeks while we await his surgery, and the health of our household. So far we all have been cold/flu free!!
2) Please pray that God will grant peace and patience to me and Brian, as we again prepare to place our son into the hands of the doctors. Also pray that God will prepare Braden, Merrick, and Kenya for whatever He has in store for our family. Each surgery gets tougher each time around, since Tyson continues to develop his own special personality, he can communicate with us more and more, he tells us "I lah you," he makes us laugh all the time (especially the boys), and we just love him more and more with each passing moment. I'm sure all parents can relate to the increasing attachment you feel to your children with each passing day.
3) Please pray that Tyson's pulmonary veins will start to grow on their own. Right now his heart is growing but these veins are not. The Cole's procedure they will do at the same time as the Fontan, will attempt to "fix" the problem, but if the veins don't begin to grow on their own, Tyson may need repeated procedures, or there's the possibility that he may not live a very long life. (This is so hard to believe, considering Tyson looks SO good today! We'll ask for more details about the pvs with his surgeon/cardiologist at pre-op.) We would love to have Tyson stay with us for a very long time!! So please pray that his veins will continue to grow as the heart grows.
Thanks for checking in, and thank-you again for your prayers!
Mel:)