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!

Tyson's Glenn Surgery

Hi all. Tyson had his Glenn surgery this morning. He went into recovery at about 11:45 am, and then he was admitted to ICU, and we got to see him at about 1:00pm. He looks good but is still intubated. They tried to extubate in the OR already (they like to push things along as quick as possible after this surgery) but he stopped breathing so they will try again later this afternoon or this evening.
When we met with Tyson's surgeon Dr. VanArsdale this morning before surgery, he mentioned that on the last echo, he noticed that Tyson also had a leaky valve in his heart that he was going to try to repair today. He wouldn't really know what he could do about it until he went in to see it with his own eyes.
After surgery, Dr. Van Arsdale reported that it was a standard second-stage Glenn surgery, and that he was able to close the leaky valve as best as he could (it is a valve in the heart that is leaking blood because it has started to split open.) Dr. VanArsdale is unsure how long this repair will hold but will be keeping a close eye on things through future echos.
We also got some unsettling news about the veins that bring blood from the lungs back to the heart. When Dr. VanArsdale was operating, he noticed that the veins are quite narrow. This means that blood may back up in the lungs and not be able to flow easily back to the heart. There might be too much blood in the lungs and this will affect his breathing. They might not be able to continue on with the Fontan surgery (the third stage surgery) until they know more about these narrow veins. Unfortunately, this may involve an additional surgery before the final Fontan surgery. Things are still very uncertain right now but we will know more when we meet with Tyson's cardiologist and when he has another echo to look at what is going on in there.
I don't understand everything right now, Brian and my Mom understand it better than me, but right now I can't process it enough to relay it any better than that. We hope to have more information at a later time.
Please keep Tyson in your prayers as he recuperates from surgery.
Brian and Mel:)

14 comments:

Mel said...

Hey guys! Hope Tyson heals quickly and can come home soon. You are in our prayers constantly!

Emily said...

Definitely praying!
God bless.

Anonymous said...

Hi guys
Thanks for the update. We will as always keep praying for Tyson and for your strength to endure.

Love always
Lea and Derek

Sara said...

Praying for you! Can only imagine how difficult this can be for you!
So thankful we can be a peace and know that we are being carried and the Lord has a plan for your family, especially Tyson!
Hugs!☺

Anonymous said...

*HUGS*
still praying, jac

Aukema family said...

Thanks for the update Mel, praying constantly.... especially for Ty but also for you guys just sitting around waiting...lean on HIM for strength..
missed seeing your clothes outside today :-) and the push for me to get mine out !
*hugs* the aUkEmA's

Anonymous said...

It is good to have the update so soon. While there are concerns, we have a Heavenly Father who takes care of us. We can put our hope and trust in Him and we pray that for you both!
love Henry & Marg

RickTamsClark said...

Our thoughts and prayers are with you and your precious gift from God

Michelle said...

We will continue to remember Tyson and the whole family in our prayers! Hopefully he will come home to you again soon. Even though things may not look as good as we may have hoped, the Lord is looking out for all of you and is continually there for us, carrying us when it seems like we can't bear any more! He provides the strength that we need in order to get through our challenges! At least we can find some comfort in knowing that Tyson's life is in His hands at all times!!

Scott & Tanya said...

Hi Mel,
We are continuing to pray for you all. Singing the song "God will take care of you, through every day, for all the way, God will care for you, God will take care of you!" and thinking of you.
Scott, Tanya, Kate & Alex

Joanneke said...

Hi Brian and Mel,
I've been thinking of you all day, and the first minute I could get, I checked the blog... We're so thankful that all is well, and we pray for a speedy recovery.
Love,
Bernie and Joanneke and kids

Anonymous said...

"Be still and know that I am God;"
Brian and Mel, we are praying for patience and strength for you during Tyson's recovery time. God is our refuge and strength, keep your eyes on Him and He will give you strength.
Give Tyson's hand a squeeze for me!!
Still praying
love,
Jeff and Karen
Joel, Aaron, Jonah, Hanna

Anonymous said...

hi brian & mel,

we have all been thinking of you all day, hope that things go well and that he recovers quickly! we are keeping you all in our prayers!!

Gerald, Michelle,
Tristan, Austin, Dylan, Ethan and Madison.

Aunt Rita said...

Good news! Thankyou so much for taking the time to post the blog Melissa and Brian!! Our prayers are answered! Now for the recovery, and mommy milk tolerance, and you can go home in a few days? Ahhh...recuperating at home is the best.
Take care dears!!