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!

Adios, March!

March used to be my least favorite month of the year.  Friends and family will recall how much I hated the month of March. At the end of February my brain would tailspin into deep depression and anxiety because I was so scared about what March would bring.  For those of you don't remember our journey,  it used to be that every year - usually 1-2X per year - but every March without a doubt, Tyson was hospitalized because of pneumonia.  And if you're a Heart Mom,  you'll know and understand that pneumonia can be fatal in cardiac kids.  With spring trying to rear its pretty head in the month of March, the ups and downs in temperature reek absolute havoc on kids with asthma, not to mention a kid with a heart condition! Each year, Tyson would hold his own all winter long but for some reason, his body would cave in March and he'd be admitted to the hospital.  It wasn't until the end of 2014 when we were introduced to doTERRA that our lives changed forever.

Here I sit on the last day of March in 2018 and I can reflect on God's mercy and grace in giving Tyson good health again this past winter.  He had one bad cold in December where we kept him home from school for a week to focus on getting him better and let the oils work their magic (and work they did!) but other than that, he's been so so so healthy.  A small sniffle or scratchy throat here and there, but nothing that lasted longer than 2 or 3 days.  We're so thankful that this past February we could celebrate THREE YEARS hospital-admission free!

We spent March Break in Florida and visited our happiest place on earth again, Give Kids the World.  We had our traditional family pic with Mickey and of course went to the beach.  We didn't do any theme parks this year because I had a doTERRA leadership event for three days.  We were thankful it fell in our kids' March Break so we could make a holiday of it.

The apixaban study is going well.  I thought the liquid medication would be a deal-breaker for Tyson since he has oral-texture issues, but he's being such a trooper.  It's very helpful that he's being compensated for his participation in the study!  Very soon the mini-tablets will be ready for him so he can go back to an oral pill.  Tyson has been swallowing pills since he was 3 because he's been on coumadin since he was 2 and it's not available in liquid form.  The mini-tabs have been approved by the sponsor company but it has to be reviewed by Sick Kids' ethics board yet so it could be another few weeks yet.  We will all be relieved when they are ready!  The ingredients in the liquid med are nothing to brag about and actually go against mostly everything I believe in as a crunchy Mom...but hey, we'll do it in the name of research!  

For some reason, I just really needed to write today.  I needed to put pen to paper (or text to screen ;) and tell the world that Tyson is healthy, God is good, and we are so blessed.

Happy Easter, everyone!
And adios, March!

Happy to see Mickey Mouse again!



Happiest in the SUN!