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!
I will tell of all your wonderful deeds.
I will be glad and rejoice in you;
I will sing the praises of your name, O Most High
Today we said good-bye to Tyson's last JP tube! His chest x-ray was clear again, and he has had minimal drainage since being off the steroids, so it was good to go! (We were a little worried about the x-ray since Tyson has quite the cough right now...but it must all be upper respiratory because his lungs are clear. I packed overnight bags just in case. Looks like Murphy won again :)
As soon as we walked into the treatment room, Tyson was saying, "No owies! No owies!" But once we left again, he was waving, "Bye-bye tubie!" (He did have a bolus of morphine for the procedure but it never dulls ALL the pain.)
It feels sooooo good to have this stage behind us now. Officially. It's never over until the fat lady sings. Well, I was singing the whole way home :)
Tyson is now in a pair of jeans for the first time in 4 weeks, and a nice onesie undershirt again finally...and he's going to have a nice warm bath tonight :)
Tyson will remain on the minimal fat diet for 6 weeks starting today. The purpose of this is to prevent the reaccumulation of fluid, since fatty foods can irritate the lymphatic tissue, potentially causing it to start leaking again. It hasn't been too bad though; it just takes some extra thought when grocery shopping, and sometimes I have to cook two completely separate meals. Overall it's going well.
Thanks for praying along with us, everybody. We surely do appreciate your thoughts and prayers. We are so pleased that the steroids worked and he was finally able to stop draining...four weeks later!
We're at the pediatrician next week for a checkup and to get the stitches from the tube insertion removed. Then the next trip to Sick Kids is January 26th. Tyson will have a full echo, ecg and appointment with his cardiologist then. Look for an update again around that time.
Blessings to you all,