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 Five Post-Norwood - Tuesday, December 9, 2008

"I lift up my eyes to the hills
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth. "
Psalm 121:1,2
There hasn't been a whole lot of progress today. But thanks be to God, that Tyson hasn't taken any backward steps either! As of this morning, we were thrilled because they had turned the ventilator off and had it in "support mode" which only gave him breaths whenever he needed them. But he was doing most of the breathing on his own so they had hoped to be able to extubate him later today (take the breathing tubes completely out.) But because of some fluid behind his right lung, they had to do an MRI this afternoon to check out his lungs and heart first before removing anything. So they have held off on extubating him, took the MRI this afternoon, and we will get results later. Because of his MRI, Tyson was quite sedated again today so he wasn't awake a whole lot. Although he did open his eyes and look curiously at Daddy later this afternoon.
As soon as we get those breathing tubes out of his nose, we will take more pictures and will post them up here, we promise! He is looking better, his skin is a healthy colour but, boy oh boy, does he look long and thin! We are definitely not used to seeing our two-week old babies without a double-chin or chunky thighs, that's for sure. He is keeping down the breastmilk okay again and they hope to increase his intake again soon.
That's really all that has happened today. Hopefully tomorrow we have more to report. Brian's parents are bringing up our boys to visit for the day (yes, Braden will be playing hooky!) Then Brian is going home with them later in the afternoon and I will be braving the hospital all by myself.
We are doing the blog "early" tonight because we need to rest up our weary bodies to have energy for our bouncing boys tomorrow! LOL
Take care,
Brian, Mel and Tyson

5 comments:

Scott, Tanya and Kate said...

Hi, thanks for the "early" blog tonight, now I can get to bed on time tonight too!! LOL I was going to call you tonight but I'll leave you to resting up for tomorrow. Have a great day with the boys! I'll probably call tomorrow before Brian leaves with the phone so I can talk to you Mel.
Glad to hear things continue to go forward well with Tyson's recovery. We will pray that he can have the breathing tubes removed soon. Just think, he is one day closer to coming home!!
Take care. Love from Scott, Tanya and Kate.

Jeff and Annette said...

Hi Brian and Me. Just letting you know that we are thinking of your over there and that we continue to pray that the healing process for Tyson will continue to progress. We also pray that you will have the strength and faith to abide by our heavenly Father's quidance and providence in all of these things. Have fun with the boys today, I'm sure it will brighten your day! See ya!

Jeff and Karen said...

Hey there!
Hope you had a good day with the boys!!! Aaron was a little envious of Braden for getting to miss school today!!
k

Melanie said...

Leaf players, eh? You better post lots of pictures!!

Anonymous said...

Hello,
So nice to hear that Tyson is making good progress!!
Leo and I were thinking or hoping to come on sat. for a visit.
Hope you had a nice visit with the boys today!
God bless.
Love Leo and Joni and the boys.