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!

Tuesday, December 30, 2008

The LORD is my rock,
my fortress and my deliverer;
my God is my rock, in whom I take refuge.
He is my shield and the horn
of my salvation, my stronghold.
Psalm 18: 2

The doctor said that Tyson's incision looks better today. Personally I think it looks worse because it seems to be splitting open a teeny little bit. The doctor says that is a good thing because it means the drainage is finding its way out, otherwise they would have to slit it open to let the drainage out. The redness is still there but the swelling has gone down because it is all draining out like it should be. The antibiotics seems to be taking effect and we give thanks for that! They say the incision will repair itself again in due time.
Tyson had a miserable night last night because he was in a fair amount of pain. He woke up every hour or two screaming and wrenching his back in pain. He was inconsolable when we picked him up. We fed him each time he awoke to see if that would calm him down but I think he was at a point where he didn't know what he wanted anymore. We discussed with the doctor on rounds this morning about ordering him Tylenol every four hours to stay on top of the pain instead of trying to overcome it when it hits. He was very sleepy this morning and not interested in eating much at all because he was trying to catch up on his sleep that he should have been taking last night. This afternoon was much better and he is waking for feeds again. Hopefully tonight he will be more restful and we can have a better night of sleep.
Tyson is not on any monitors anymore, since he hasn't been at home either since last Monday. So it is nice to be able to walk around the hospital with him and get out a bit without feeling like we have to rush back in case he awakes. The only thing is, we have to drag his IV pole around with us, but at least we can get out and do our own thing somewhat.
So the doctor is pleased with the way the incision is healing but there is a possibility we won't be home tomorrow yet. It could be a few days on IV antibiotics and then at home he would have some oral antibiotics.
Wishing you all the Lord's blessing in the New Year!
Brian, Mel and Tyson

2 comments:

Melanie said...

Eeewww it sux that you might have to stay for longer!! Sigh! But that is great news that the incision is healing well. We hope you have a better night tonight and pray that Tyson will be able to come home again soon. Happy New Years!! Jay, Mel, Jaidynn and Mikayla

Johnand Hilda Spanninga said...

Thinking and praying for you all. Hoping you are back home for New Years Eve. Have a restful night sleep knowing that the Lord is watching over you. God Bless. Dad and Mom