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!

Day Fourteen Post-Glenn - Tuesday, May 26, 2009

"The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song."
Psalm 28:7
Tyson is doing GREAT! Last night he was drinking well so they pulled the Ng tube. He was weaned off the oxygen today. The tegaderm tape that was used to hold down the oxygen prongs onto his cheeks left nice red rashy cheeks, and he's also had the tape on his face for two weeks from the ventilator being taped to his cheeks too. Poor boy has inhertied his mother's sensitive skin.
His PIV line came out today as well as the heart pace maker wires that they put in before surgery. He has lots of little dents and scars all over his body from lines, tubes, and wires, and his incision is healing nicely. The last time he had bigger scars from the chest tube stitches than the actual incision itself.
Last night I went to the RMHouse to sleep and apparently Tyson gave the nurse a hard time. He only slept from 12am-1am and was awake pretty much the rest of the night! He would cry whenever she left his room but when she came back he would smile and want to play games. The nurse ended up doing all her paper work and such in Tyson's room so that he would be happy. The tv entertained him for a while too. When I got here at 7am he was still awake and ready to go! He spent most of the morning awake but he did sleep the whole afternoon since they gave him morphine before pulling out the pacemaker wires. I am concerned that he is a little mixed up about his days and nights, but once we get home I am sure he wil figure it out again. The other kids will keep him awake.
I got to nurse him again and when doing a pre and post weight, we figured he drank over six ounces. Yay!
So things are looking really good and my guess is that we should be able to go home by Thursday-ish. That is if things continue to go well.
Thank you all for your prayers and support. Thanks also to Nic and Candice who came up for a visit today. It was a great to spend the afternoon with you!
Mel:)

3 comments:

Mel said...

AWESOME!!! It took him a bit but he is running on the road to recovery now! The Lord is good! Can't wait to see you at home!! :)

Anonymous said...

that's so great!! so thankful for God's grace....
jac

Grant and Marg Kottelenberg said...

Praise the Lord that all is going well! We certainly pray that Tyson and you will be able to come home soon. I feel so bad that I have not been able to make it up but we have had way too much sickness in this house for me to risk it. I have also been battling something ... but it hasn't fully developed into anything ... yet. I will come to see you (in hospital or at home) as soon as possible. We think of you and pray for you often! The girls say "hello".

Grant, Marg & family