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!

HAPPY NEW YEAR!

HAPPY NEW YEAR!
The doctor on rounds this morning said that we could most likely go home tomorrow....that is Friday. We are hopeful.... but not getting our hopes up tooooo high, because you never know around here when things could change. It would be great if we could be home tomorrow, to spend some more time with our kids before they go back to school and Brian goes back to work. We shall see.....
Tyson had a good night last night. We left him at about 11:30 pm to walk down to Nathan Philips Square to ring in the New Year. It was packed there, we have never seen so many people in the same place at the same time. There were thousands of people there! Once we found a nice spot with "not too many" people around, it got tighter and tighter as midnight approached. By 11:55 pm, we were all packed in like sardines and wouldn't have been able to leave even if we wanted to! But it was nice to see the fireworks and get out into the fresh -25 degree air! It was warm while we were there but the walk home was crazy! Soooo cold! But it was an experience we won't ever forget.
Tyson was almost sleeping when we got back, he's a bit of a night owl. But then he slept till 3am and then till 6:30 am. He's getting better at sleeping and can now comfortably go 3 1/2 to 4 hours between bottles. He is now drinking 90-95 mls per feeding. He's been very happy again lately and hasn't been on any Tylenol since late last night. And the way he looks into our faces and pulls his mouth all funny tells us that he is definitely trying hard to smile, hopefully we see that first smile soon!
Hope everyone enjoyed a nice New Year's event and we hope to see you all this Sunday!
Thanks to the families that are taking care of our darling children, especially on short notice. If there's anything you need, you can stop by the house and find your way around.
Have a great day everyone!
Brian, Mel and Tyson

4 comments:

Eric and Jaclyn said...

hello,
just thought i'd let you know that braden is having a lot of fun!! in the bush/swap behind our house eric is making an ice rink for the kids (he even got up early today to flood it again)....and the boys have been skating all afternoon! they even had a campfire in the snow :)
still praying :)
jac

Scott and Tanya said...

Hi,
Kenya is doing well too. She and Kate were both grumpy this morning from being up late last night but a good nap on the way home helped. They played nicely this afternoon, had a good dinner and went to bed pretty easily. A few tears at bed time but only because she loves you and misses you of course! Selfishly I don't mind having her here for a few days but I hope for you and your family's sake that you call tomorrow to say you are on your way home!! We will pray that that happens and that Tyson will be back to focusing on growing stronger and stronger rather than battling infection! Talk to you soon.
Love, Scott, Tanya & Kate

Jeff and Karen said...

Mick and Jonah are having a good time too...Jeff's hockey game went late yesterday afternoon so they spent some time goofing around at the arena. Then we went to J's parents for some olibollen then home for a "picnic" supper in the family room. They were in bed on time and crashed really quickly! So, well rested, they are ready to attack today!They had a blast skating yesterday....all that rollerblade hockey this summer has paid off for those two! They can skate really well!
We hope to see you guys later today, but if not, remember that it's best for Tyson that way. It looks like your other 3 are having a great time enjoying company with their friends!
Keeping you in our prayers
Love,
Jeff & Karen
Joel, Aaron, Jonah, Merrick, Hanna!!!

Anonymous said...

Happy New Year! Hope to hear you are on your way home today!
Was talking to Braden yesterday and he was all excited to be going on "another sleepover!!" Better than him being sick of it huh?
Hope you guys make it home safely today and hope Tyson is healing well. Keeping you guys in our prayers!
Lea, Derek and kids