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 nine 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 Ten WE'RE HOME!

"But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing the LORD’s praise,
for he has been good to me."
Psalm 13: 5, 6
Tyson and I are going HOME TODAY! The JP is still in place, and draining quite a lot. So there's no chance of the JP being pulled today or tomorrow, or even Sunday. So we might as well quit hanging around here and get home to enjoy the holiday season. Brian is working today and then coming by to pick us up. Then we'll be back at Sick Kids on Thursday for a clinic appointment, they will change the dressings around the JP. If the draining has stopped by then, they will pull the JP. If not, we will come back again the next week for dressing changes, etc. and continue on until the draining stops.
Usually they will only allow a patient to go home with a JP if they are within 90 minutes from the hospital. We are slightly outside that limit because of traffic. But the cardiologist who said "This boy needs to go home." is waving his hands at us, telling us to get outta here! LOL
I have to make this quick, since discharge day is always insanely busy. Meeting with pharmacist, thrombosis, NP for JP drainage instructions, booking new appts, and I have to go down to RMH yet to turn in my key.
So I am signing off now. Will write more at another time, if I get the chance yet tonight.
Please keep praying that the draining will stop soon :)
Mel:)
WE'RE HOME!
The BEST BEST BEST feeling in the world was watching my son snuggle down under the covers of his nice, warm bed, grinning from ear to ear beneath his soother. The tears were quite literally pouring outta my eyes watching him enjoy his own warm bed, and it was then that it finally truly sank in that my son has survived his third open-heart surgery!
THANK-YOU, LORD!

11 comments:

Tanya said...

YAY YAY YAY YAY!!! Welcome home (providing you read this tonight from the safety of your home)!!! Have a great weekend and we'll look forward to seeing you soon! Will continue to pray that all goes well so that you won't have to take any sudden trips back. T

Amy Morton said...

Hi Mel,

Yeah! So glad you are on your way home. I have been praying daily for Tyson, Brian, the other kids and you. I know how frustrating this process is....when our boys are doing well, but not quite recovered and you are ever so tired of the hospital and the rollercoaster ride of not knowing what will come next. I'll admit that reading your posts have made me both anxious to get the Fontan over and done with, and also wishing we didn't have to do it at all :) Tyson has done remarkably well though and for that we thank God! Keep up the posts so that we can know specific prayer requests.

Amy

Anonymous said...

That is such great news! We are so happy for you! You'll both get to sleep in your own beds tonight! We'll be praying for Tyson's continued health and recovery. Hope this busy day goes well!
Dave & Melissa

Anonymous said...

That is such awesome news!! Hope that both you and Tyson can have a good sleep in your own beds tonight!! We continue to pray that Tyson will continue to do so well with his recovery.

Gerald, Michelle & Family

Gwen said...

Wooooohooooooo! :)

Anonymous said...

So good to hear!! Catch up on some sleep and if you get the chance, PAMPER YOURSELF!!!

Hetti

Aukema family said...

Yeah yeah YeAh ! Great news. God is good, kids done school today Mommy & tyson come home :)
Hope everything went well during the discharge process. When you get home if you need ANYTHING at all please please call.....

Anonymous said...

Praise God!!! So happy for you all. Enjoy your time together as a family and I pray that the draining will end soon and that there won't be any further complications. Steve and Sarah

Joanneke said...

And the tears are streaming here too!! What a wonderful post to read! God is SO good!!

Anonymous said...

Yay! Absolutely, fabulously excellent!!! It must be great for you to sleep in your own bed too!
Praise God!!!
jkjajhl

Anonymous said...

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!!! We are so thankful with you that Tyson and you could return home!!! Yeah!!!

Grant & Marg, Lindsay & Shaelyn