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, March 13, 2010

Tyson is stable. The oxygen is being weaned off slowly and his sats are remaining stable at about 75% with smaller amounts of O2. 75% is still not the best number, but he won't be able to go home until his sats stay at 75-80 for at least 24 hours without any O2 help at all. The preliminary swab results have come back negative, indicating there is no viral or bacterial infection, but it can take up to 48 hours for bacteria to grow. Since the swab was taken this morning, it may take till Monday to know for sure. Either way, he is stable and hopefully can come home soon. It's hard to understand why this has happened, especially since it wasn't really the cough or cold that concerned us the most. We were more concerned about his colour and unusual behaviour, but I guess even a small cold can affect him this way.
Tyson's mood remains happy, he really enjoys playing peek-a-boo with the nurses as they peek at him from outside the door. It's hard to not be allowed to go out for a walk around the hospital with him. As long as he is showing symptoms of a cough or cold, the nurses have to gown-up and wear a mask around him, and we have to keep his door closed at all times, especially because we don't know what is wrong with him. Last night he slept the best he has in several days; very settled and into a good, deep sleep :)
We were able to spend time together as a family. Brian brought the kids here and they enjoyed seeing Tyson again and spending time at the Play Park and at the ever-popular Marnie's Lounge. They also brought up a tennis ball and mini-hockey stick for Tyson and he is quite enjoying playing catch with the nurses when they come in.
That's the update for today. Keep the prayers going up!
Mel:)

1 comment:

Sara said...

Strength again will come to you from the Lord. We had "slowed" down our prayers. Sorry. We will be more faithful! :-)
He has brought you this far...HE will continue to carry you.
Love, Edward & Sara