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!

New Year's Eve - Wednesday, December 31, 2008

New Year's Eve in Sick Kids Hospital. Hmmm.....well at least my hubby is here with me! Thanks Aunt Mandy for watching our kiddies tonight! Hopefully we aren't too much longer. We will know more later today hopefully.
Tyson was a bum yesterday evening. He had a snack at 8pm and then stayed awake till 11pm, at which time we gave him another bottle. Thinking he would sleep really well that night, right? Well... then he spit up pretty badly that he needed a bath, which woke him up again (at 11 pm)! Then he spent some time being content and looking around the room but then didn't settle well to sleep so we fed him another bottle again at 1:30 am. He finally settled to sleep by 2 am and then we didn't hear from him again until 6 am. That felt like a great sleep! He was able to go 4 1/2 hours between feeds, but it would have been nice if it was a little earlier in the evening! LOL I guess beggars can't be choosers.
This afternoon Tyson had some bloodwork done to check his enoxaparin levels (the injection he gets in his legs.) They just want to double check that his levels are ok otherwise they will adjust the amount he needs to have injected.
Later today the surgeon is going to have a look at the incision again and give us a rough plan of what to expect as far as how many days he needs antibiotics thru IV. The nurse practitioner mentioned this morning, it could be 5 days from when they started. That means we are here till Saturday-ish. *sigh* This is best for Tyson, but not so easy on us. We kinda liked being home and getting into a good routine before Brian has to go back to work and the kids go back to school. (we were also very spoiled to be home for Christmas!) But the incision is healing well and the more IV antibiotics he gets, the better chance of it not re-infecting again once we are at home.
So hopefully that means that once we are home, we can stay home!
I will keep you posted.
Have a great night everyone if you don't hear from us again today!
HAPPY NEW YEAR!
Brian, Mel and Tyson

4 comments:

Melanie said...

Happy New Year to you guys too! I hope you have a nice relaxing night with your hubby and hopefully Tyson behaves himself too! We wish you a wonderful 2009...and hope and pray that Tyson heals well and can come home soon!!
Lots of Love: Jay, Mel, Jaidynn and Mikayla

willowsprite said...

Happy New Year!
Love Stu, Sherri and Callum.

Garth and Alida said...

I'm feeling for ya Mel - little "routine" things like blood tests seem so basic to most people, but I know well that each time they poke him, they poke your heart too! I hope it gets easier over time! We're thinking about you...it'll be a New Years you won't soon forget! All our love, Garth and Alida, Sara, Noah, Julia, and Nadia

Bernie and Joanneke said...

Dear Brian and Melissa,
Happy New Year! You go into this year a lot differently than any other so far, but you know that God is faithful, as He has been, so you can look forward with confidence that He will be there for you, no matter what this year brings.
Love,
Bernie and Joanneke and kids