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!

We have a surgery date!

I received a phone call from the surgical co-ordinator this morning regarding a date for Tyson's upcoming surgery. Dr. VanArsdell will be performing the Fontan, which will connect the inferior vena cava to the pulmonary artery, redirecting the blood from the IVC to the lungs. He will also perform what's called the Cole's procedure, to fix his small pulmonary veins.

The date they have given us for this surgery is November 18, just three days before Tyson's second birthday.

Although Tyson will be spending his birthday in the hospital, I would rather this than having to spend Christmas in the hospital...although there is a chance of that happening too. If Tyon's surgery date gets bumped because of an emergency surgery, he will get bumped into December because Dr. V is going on holidays later in November.

We have also allowed Tyson's name to go on a list in case of cancellations. We have asked that they give us at least two days notice in case of cancellation and they want to put Tyson in, that way we have adequate time to head down for pre-op and also arrange accomodations for our other children. Nothing is too urgent right now that can't be rescheduled. Except maybe a wedding in October :)

Brian was concerned that maybe if we chose to be on this cancellation list, I might be anxious and wait by the phone just in case they fit Tyson in. I assured him that I would not do that, and compared it to being pregnant. You have an expected due date, but you know the baby could possibly come earlier or later. I didn't wait around for labour to start early, but considered it a bonus when it did :) So I don't think I will be anxiously waiting for a cancellation. I will just go with November 18, and know it could possibly be earlier or later.

Please keep praying for Tyson, that he will stay healthy until Fontan day! If you could also say a little prayer for the rest of us too, that we don't become too anxious or worried. The boys are excited to have this surgery over and done with too, and are constantly asking questions about when the surgery is, where they will be staying, how long Tyson will be hospitalized, if we'll be home for Christmas, etc. I know it affects them too and we've even had to answer some questions about what we'd do if Tyson doesn't recover from the surgery :( We try to answer these questions in a positive manner and remind our kids that we are all in God's hands, and whatever the outcome, He will give us the strength to get through it. Of couse, we are going to worry a little (or a lot) over such a life-threatening surgery. Each surgery gets harder because we love our little guy so much more with each passing day. But I firmly believe that if God can bring you to it, He will bring you through it :)

That's all for now! So glad to finally have a surgery date! Now the trick is keeping this little guy healthy until then :)

Still waiting...

We are still waiting for the phone call from the surgical co-ordinator at Sick Kids for Tyson's surgery date. I have called them twice already and left messages for them to please call, but still have heard nothing.
I will post as soon as I hear from them.
Mel:)