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 nine 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!

Information About Tyson's Next Surgery

Hi there! Today we received a phone call from a member of Tyson's surgical team informing us of his next surgery. Tyson's surgeon Dr. VanArsdale and his cardiologist Dr. McCrindle, as well as their team of experts, have decided that Tyson will need his next surgery within the next six weeks. The date that they have scheduled Tyson in is Thursday, April 9, 2009 (the day before Good Friday.)

For the Glenn surgery, the surgeon will connect the Superior Vena Cava (SVC) directly to the pulmonary artery. The "blue" blood then goes directly into the lungs instead of through the heart. The BT shunt that was placed between the pulmonary artery and the aorta in the Norwood operation (on Dec. 4/08) will also be removed. This also means that we no longer have to inject our son's legs with needles twice a day, since the danger of blood clots is minimized and he won't need the blood thinners. When we asked Dr. McCrindle if he would need the needles after the surgery he said, "Probably not." Here's hoping that things go as planned and we can do away with those needles and see Tyson's legs without bruises for once (well, at least until he becomes a toddler and gets his own self-inflicted bruises!)

Lately Brian and I have googled the names of Tyson's surgeries (Norwood, Glenn and Fontan)and his various heart defects and we have come across some blogs from others who have children with similar heart surgeries. We are amazed at God's goodness and grace to us and to Tyson since he doesn't seem to be hitting as many speed bumps as some of the others in his shoes. Others in his situation have spent prolonged periods of time in the hospital, or have had additional surgeries due to complications (like gall bladders removed or eye surgeries), or have had to stay on the feeding tube for over a year after surgery, have difficulty gaining weight....the list goes on.
So far Tyson is gaining well (he's over 13 lbs now), he sleeps well (from about 9pm-4:30am), and he behaves like any of our other babies. He doesn't seem to be behind developmentally (although this may change after the next surgery since he won't enjoy spending time on his tummy anymore for a while, which may impede his ability to crawl.) He is almost four months old and he smiles, coos, laughs, responds by kicking legs and flapping arms when we look at him or talk to him, he enjoys time in the excersaucer and jolly jumper....so far so good! (We tend to compare him to his cousin Mikayla from Jason and Melanie, who is four weeks younger than Tyson - see pic to the left.)
Needless to say, we are thankful that we didn't view these web pages before Tyson's first surgery because I'm sure we would have been very scared! We are grateful for Tyson's progress in every area of his life and often we look back at past blog entries and think to ourselves, "Wow, he really has come a long way!" All evidence of God's goodness and reason to give thanks!


That's all for now!
Brian and Mel:)

2 comments:

willowsprite said...

He certainly has! Wow, he's getting so big already, and he looks so well. Thanks for the update, and we pray that all goes well with his next surgery.
Love,
Stu, Sherri and Callum

Joanneke said...

Hi Brian and Mel,
I had a little peek to see if there were any updates and yes! There were even pictures to look at! I'm so glad you have this blog, and I hope you keep it updated since we live along with you and continue to pray that all will go well.
Love,
Joanneke (and Bernie and kids)