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 FONTAN-IVERSARY TYSON!!

Today we celebrate six years since Tyson's last open heart surgery!!!  

HAPPY FONTAN-IVERSARY TYSON!!  


 Check out Tyson's new Sick Kids t-shirt!!   


This is what BRAVE looks like!

The cardiac clinic at Sick Kids has a program called Bravery Beads.  For every ECHO, ECG, chest x-ray, blood work, surgery, heart cath, IV stick, intubation/extubation, hospital admission, emergency event, etc. etc. etc. etc. we are given a bravery bead.  We actually weren't even aware of this program until AFTER Tyson's third open-heart surgery, at which point it was too overwhelming to even think about how many beads he could have had up until that point!
However, with the incredible details I've kept on this blog over the years, I spent several hours last week (and got a VERY stiff neck) re-reading ALL of my blog posts from the past 8 years so we could come up with an estimate of how many bravery beads Tyson should have received.  I'm sure I've missed some, since in the beginning I didn't blog about every single clinic appointment, chest x-ray, or visit to the lab for blood work.  But this is a very good representation of what he has been through in the past 8 years.  He LOVES his bravery beads and is very proud of them!  I'm so glad we were able to do Tyson justice and spent the time blogging, reading, recording, and collecting the beads that he deserves.  


The strands in his right hand are from ages 0-3 and the strand in his left hand is from ages 4-8.  With his frequent hospital admissions because of pneumonia, he still has waaaaay too many bravery beads for ages 4-8 but we anticipate that the amount of beads he gets from now on will decrease with passing time.
Blood work - 73

Clinic appointments at Sick Kids - 46

IV starts - 33
Intubation/Extubation - 22






 I was thinking later that he should have more for intubation/extubation because for every cath and MRI he was also intubated and I didn't remember to count those 

Test & Scans - 127
 
This is the check list I used to record his procedures

Last week we went to Sick Kids for Tyson's regular ECHO, ECG, cardiologist appointment and also an appointment with the Thrombosis team.  He also went for some blood work to check liver enzymes, albumin levels, etc and to calibrate his CoaguChek machine. 
It was such a long day!!  We didn't get home till 8pm because it was a full day of appointments and of course traffic is just so horrible. So we were all pretty exhausted by the time we got home.  BUT we got the BEST news ever!
I've been waiting six post-Fontan years to hear Dr. McCrindle say this and last week he finally he said it.  "See you in a year."

SEE YOU IN A YEAR!!!!

We are so thankful for the stability in Tyson's life right now.  His heart is holding up, his respiratory concerns are quickly disappearing thanks to our amazing essential oils (not a single cold since March 2016!)  his moods are more manageable, his overall progress in life is astounding - and we owe all our thanks and praise to GOD THE FATHER!

We do have to return to Sick Kids for other annual appointments, like renal ultrasounds & nephrology (kidney specialist) the thrombosis team sees him once per year, he has bone density scans every two years,  and Dr. McCrindle wants us to keep seeing the Sick Kids dental team twice a year because his blood thinner complicates things and Sick Kids has cardiac anesthetists if he ever needed dental work done.  As much as it's not great fun to have to drive all the way to Sick Kids just for dental cleanings, if Dr. McCrindle is more comfortable with that, than so are we.  And Tyson certainly enjoys Sick Kids' dentists much more than our local dentist too. 

We're so thankful for good news!





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