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!

Saturday, December 27, 2008

It is soooo good to be home for the holidays! We enjoyed a wonderfully quiet Christmas day with my Mom and Dad Spanninga and Mandy. The kids enjoyed some snowmobiling, we played some cards, and my Mom and I cooked a nice turkey dinner. It was exactly the way we wanted to spend the day. Nice and quiet, and together as a family.

Tyson is doing well. He seems to be drinking an awful lot! He takes 80 mls at a time, eating every 2 1/2 - 3 hours round the clock! Brian has been VERY helpful and even gets up for one of his feedings in the middle of the night. One of the advantages of bottle feeding, I was beginning to think there weren't any at all! I might as well take Brian up on his offer while he is on holidays, because once I am nursing Tyson, it will all be up to me!

Tyson was 7 lbs 12 oz on Tuesday when the nurse came over. This morning he weighed 8 lb 4 oz....so he is steadily gaining!

He seems to be a pretty happy baby, although he is quite demanding because he is hungry so often. I've tried to give him more than 80ml each time but he often ends up spitting it up.
Right now he is squawking for some more food so I better get his meds ready, feed him, and get him (and me) into bed.

Tomorrow morning a home care nurse is coming over to have a look at his incision site. She was supposed to come on Monday morning but I asked them to come in earlier because the incision seems to be oozing a little. Nothing too concerning, but it should be looked at. We have covered it with gauze so that his clothing does not rub against it and cause discomfort.

Tomorrow afternoon Tyson is going to be baptized along with his new cousin Mikayla! We are happy that the Lord has provided for Tyson in so many ways! Excited about his big day tomorrow!

That's all for now,
Mel:)

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