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!

Sunday, December 26, 2010

It looks like the steroids are kicking in! Yesterday's drainage amount was 72 cc! (cc is same as ml) Considering Thursday's number was 294 cc and Friday was 169 cc, 72 cc is a GREAT number!
On Saturday I kept stripping the tube ("milking" it) because I was convinced there was a blockage in the tube, but no, it's just draining a lot less! The steroids seem to be taking effect.
As far as the side effects, prednisone can cause insomnia, a ravenous appetite, hyperactivity or irritability, and if it's taken for longer than a week it must be weaned off slowly as the body can become very dependent on it. So far Tyson is not having difficulty sleeping but he is acting quite crazy lately! I'm not sure if it's the steroids, or all the colourful candy he's been eating this holiday season :) He is also eating a lot more at mealtimes than normal, which is kinda nice to see.
I'm pretty sure that before the JP can be pulled out, we'd need to see numbers of less than 20 cc per day. We're not there yet but we're getting closer, and if the numbers continue to decrease every day, it might be possible to have the tube pulled on Thursday at our next clinic appointment. That's what we keep praying for. And that would also prevent another hospital stay, which we don't really want either. It's been so nice to be home for the holidays, it would be great to just stay here!
Thanks for checking in, and please keep praying that we can actually stay home for good.
Mel:)

3 comments:

Joanneke said...

Great to hear that things are still headed in the right direction. Keep us posted as to how things are progressing. Enjoy your family time!

Anonymous said...

Hope the numbers keep going down and you can stay home together!
Betty Bouwers

Anonymous said...

The boys a hoot!! Great to see your whole family this past weekend.

Garth