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 One Post-Norwood - Friday, December 5, 2008


"I will praise You O Lord with all my heart; I will tell of all Your wonders.I will be glad and rejoice in You; I will sing praise to Your Name, O Most High."Psalm 9:1,2

Last night, only a few hours after surgery, Tyson actually tried to take a breath on his own (with a name like "Tyson" he's sure to be a fighter! LOL) So they had to give him more muscle relaxants to keep him from working too hard. The muscle relaxants also help by keeping his blood vessels relaxed and more open, and this will keep his blood pressure down and put less stress on the heart. Like I said before, he needs to focus all his energy right now on recovering from surgery so whatever they can do for him by machine, they are doing. He was also on a pace maker for a short time after surgery to set a pace for his heart before it worked again on its own. He is no longer relying on the pace maker and his heart is beating on its own. They have monitors for every wire, tube and drain sticking out of his body, so they are able to tell exactly how his body is reacting to each medicine. Wow, modern medicine and technology is such a blessing!


Today Tyson seems to be recuperating as expected. He is stable and is still breathing by ventilator. No real changes from yesterday except that they were able to take him off the epinephrine a bit and will SLOWLY start weaning him off of the muscle relaxants, pain killers, etc. They really have to play it by ear, based on how well Tyson's body can handle things. They have also been putting jelly drops in his eyes to keep them moist because he is not even blinking on his own. Today they gave him a bit more morphine because his blood pressure was rising a little, so they thought maybe he was feeling a bit of pain.


It is interesting to note that Tyson's colour is back to a normal healthy pink colour, unlike the yellow jaundice he has struggled with in the past two weeks. This is because during the surgery his blood was flushed so much that all the bilirubin was flushed out. So the doctors don't think that jaundice will be a problem anymore, as long as the liver continues to work like it should.
We've had some company in the last few days too, which is always nice. Garth and Alida came on Wednesday morning for a nice visit and they treated us to lunch. Jay and Mel brought us dinner (and EGG NOG!) on Wednesday night with Jaidynn, and they surprised us by bringing up our other three kids too. We were sitting on the benches by Starbucks waiting for them to arrive and out of the elevator popped a few kids that I recognized from somewhere! We were so surprised to see them and thankful that we could spend the evening with them! Although it was a very difficult good-bye, we promised them we would be together again in "three more sleeps" when Mom and Dad Spanninga come down for a visit. We also had Jeff and Karen come to visit us late this afternoon so we enjoyed a nice visit with them too. Karen spent some time helping me get our blog organized so I am hoping that the next time I email you, it will be to give you the blog address. From then on, you can click on Tyson's blog to receive updates. That is if I remember what I am doing and can get working on it tomorrow!


Brian and I are hanging in there. We are taking things one day at a time, realizing that each day Tyson is with us is another blessing from God. He is in pretty rough shape when it comes to his appearance, but hey, he just went through a very serious surgery! All in all, he is recuperating as expected but it is still a very long road ahead.


Tonight in our pantry room where we keep our food, we met another couple whose son had the same surgery as Tyson. He is now 6 months old and has just been through the second surgery. After five minutes of small-talk, they asked us if we were Christians.....the question kind of came from nowhere! We said yes and they said, "There was just something about you guys that exuded Christians.....something about your demenour." (What a compliment!) Then of course the conversation opened up into more talk about how God controls all things and how we are in His hands. It was nice to be able to talk to other Christians who have been through what we have been through, who also know that God is in control, and who can offer support and prayers for us and Tyson.


Till next time,Brian, Mel, and Tyson

3 comments:

Melanie said...

OK Jay is officially a LOSER!! Haha those pictures were a surprise!! Your blog looks awesome seesta! So proud of you!! Was it worth the trouble??

Anonymous said...

Mel and Brian, Tyson's story is touching our hearts. He is often in our prayers, as are the two of you. Pete and Katie Winter(Aukema)

Anne said...

Hi guys! Good job on the blog! We are thinking of you alot and praying for Tyson's recovery. We are hoping to visit soon!