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!

A Year of Blessings

Reflecting on this past year, we can be so thankful for Tyson having good health!  He was able to stay healthy enough for Brian and I to go away together in January, then he had a really healthy February and March - with all the cold temperatures he stayed cold-free for two months!  Then after a rough spring with two rounds of oral antibiotics and missing a lot of school, Tyson did need a short stay at Headwaters hospital in May/June because of pneumonia again. Other than a few scary nosebleeds, he stayed really healthy all summer long and our family enjoyed some camping together and then Tyson started school full-time in Grade One. 

He's even gotten over a few colds since cold & flu season started, including this most recent one which actually spread into his lungs and caused quite a lot of coughing and wheezing.  He managed to overcome it though - with the use of regular chest physio & deep breathing exercises and regular ventolin masks; AND with the help of the new oils we've invested in, he was able to stay away from antibiotics altogether! I'm so excited that the oils were able to keep him from getting sicker and prevented the pneumonia from causing a drop in his oxygen levels.  Usually that is what causes Tyson to need hospitalization, because his O2 sats are already lower than normal and his cardiologist wants him on oxygen if they drop below 80.  With this past cold, he never dropped below 83 even while in a deep sleep.  His energy levels did decrease a bit because he wasn't able to be too active without having a coughing spell.  Once I started using the oils though, he stabilized and didn't get any worse!  I'm so thankful for the chest rub made by doTerra.  I know it kept him from needing the antibiotics.  I still can't fully believe it myself, but the proof will be in what happens the next time he gets sick.  Oh boy, I can't even begin to imagine how happy we'll all be if Tyson can remain hospital-free because of these wonderful oils!!!  Is it too much to want him to remain antibiotic-free this winter too?!?  I can't even imagine what that would be like for him! 

Yesterday Tyson was still coughing with activity but he was still able to enjoy skating at the arena.  His endurance wasn't as good, but he still had a very good time!  Then we went to my parents' house for Santa Claus and he was in pretty good spirits again.  Today he only needed physio and ventolin masks twice. I'm so glad he's better and we can get back into a more manageable routine with him.  It was exhausting doing all that physio and oiling and flu bombing BUT it was SOOOO worth it!  It has been helpful that the kids are home from school, because Braden and Merrick usually each took one turn with physio during the day.  I think our biceps are growing with all that physio :)

So our year in review is a really good review!  Once again we see God's hand in Tyson's life and in all our lives.  He has protected Tyson from serious harm and has spared him from needing any further surgeries again this year.  When Tyson was a baby, he had open-heart surgery in 2008, 2009, and 2010.  Now it's been 2011, 2012, 2013, 2014 - FOUR years since his last open heart surgery! Four full years without needing surgery.  God is so good and we're so thankful for the 'break.'

Upcoming things for 2015 is another MRI in April to assess the small pulmonary veins and get another measurement on his heart's ejection fracture.  Then his regular ECHO & cardiologist appointment in May to discuss the MRI's findings and what (if anything) needs to be done.  We pray that Tyson's heart remains stable and doesn't decrease in function, and that the pulmonary vein stenosis does not progress.

I'd like to draw your attention to another blog for which I'm honoured to write.  I love blogging on here because it's a good way to keep track of everything going on in Tyson's life.   Many times I look back at what Tyson endured in the first few years and I think to myself, "Did that really happen?"  I love reading back what I wrote and how God has molded and shaped our family to what He wants us to be.
I'm sure you all know how Cardiac Kids is very near and dear to us, since they provide us with wonderful opportunities for our family to go out and have fun.  Do you remember the video we took part in?  If not, you can view it here at the Cardiac Kids website.   Make sure you visit the site and have a look around, there are a few familiar Kottelenberg faces on there!

Well the blog I've been writing for is also organized by Cardiac Kids, with the intention to raise awareness of CHD, provide information, and help other families in the same situation. I was asked to be a regular contributor to the blog and of course I said 'yes!'

My most recent submission was How To Be A Friend To A Heart Mom

I've also written Tyson's Story  and Being A Heart Family.

So if you have time, check it out!



Wishing you all a wonderful holiday season 
and God's blessings for 2015! 




1 comment:

Joanna L. said...

God bless your family! :) Thanks for sharing and your post "How To Be A Friend To A Heart Mom" was definitely insightful even for someone who works with cardiac kids and their families!