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!

February 4th's Echocardiogram


Hi all. We went back to Sick Kids today for Tyson's full study echocardiogram. He also had an ecg and they did some bloodwork to check his Enox levels.

We left at 5:20 am to make the trek to Toronto, hoping to miss traffic. I guess there's always traffic no matter what time you leave! We did manage to get there on time, just.

The older three children spent Tuesday night at my Mom and Dad's so that we didn't have to drag four kids out the door at that time of the morning. Thanks Mom and Dad!

Tyson was not allowed to have anything to eat past 4:30 am so by the time we got to Sick Kids and had to wait a few minutes in the waiting room, he was pretty hungry. Luckily when we got in at 8:15 am, he got to eat some lovely sedative, boy did he like that! Within about 15 minutes he was sleeping soundly so they could do the echo in while he rested peacefully. We woke him up again at about 10 am so that he could eat again. Although he didn't have any trouble waking up, he was pretty drowsy for the whole morning and didn't eat a lot at all. But by about 6 pm he was back to his normal self again and was spending some time awake. He is awake again now and hopefully has had enough awake time tonight that he can go to sleep for us nicely tonight.

We also met with the Staff Cardiologist Dr. Brian McCrindle at 12:30pm. He informed us that everything on the echo and ecg looks great and they are very happy with Tyson's O2 sats and his colour, weight, etc. We weren't given an exact date for his next surgery :( but were informed that as long as Tyson continues to have good results, they will wait for him to be his strongest before the surgery. Dr. McCrindle thinks it is most likely going to be when he is between 6-7 months. This means May or June. We have to go back to see Dr. McCrindle again in three weeks. If Tyson continues to be strong, the surgery will be between 6-7 months of age. If he appears to be going downhill at all, they would operate sooner. That is all we really learned today.