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!

Summer Fun

Tyson is enjoying a very happy, healthy summer so far.  July and August are by far his healthiest months of the year, so we try to make the best of it and do as much activity as we can.
We have him enrolled in our school soccer league which he is really loving.  He acts so 'normal' out there, passing and kicking the ball, even scoring a few goals! 
We also enjoyed a weekend of camping with the Spanninga family at Valens on the July long weekend.

Roasting marshmallows
Our kids are currently finishing up week 2 of swimming lessons.  We go to an outdoor pool in Shelburne, where the lessons are at the same time every day for two weeks straight.  Because I have a few kids enrolled, I often have to spend the entire morning at the pool.  Every morning at the pool for two weeks straight makes for a very busy time and I find I get so little done around the house in the afternoons.  But I can't say I mind spending time in the sun!

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Tyson has been doing amazing at swimming this year.  He's doing so well that his teacher Allison (same teacher as last year!) came up to me today to tell me that she's bumping him up to the next level and she is going to be marking him as a Salamander rather than an Otter.  This is great news considering for the past two summers he hasn't dared put his face under water, he spent most of his lesson crying or complaining and he hasn't been able to pass the level.  This summer, however, he is dunking his whole head under water, bobbing up and down like a hooligan while he's waiting for his turn with the teacher, swimming under water like a fish, AND he can swim for a few meters by himself!  He has made amazing progress since last year's lessons. It helps that we have a pool and he already made good progress last summer with putting his face in.  He also has goggles now so he doesn't get water in his eyes and that helps him stay much happier in the water.  We've also been having some pretty amazing swimming weather, so when he's warm he's happy!  We couldn’t be more proud of him for making such good progress in the water.  Now at least he’s caught up to the level where he should be for his age.

One morning Tyson forgot his goggles so his teacher lent him a pair!!

Tyson also had an ENT appointment at Sick Kids last Monday.  He saw the local ENT Dr Riddell the week after his 911 nosebleed, and Riddell said there were 5 or 6 spots in his nose that would need to be cauterized.  Tyson was referred to Sick Kids because they would have to do sedation for the cauterization.  However, when we saw the Sick Kids ENT, he said they typically don’t cauterize kids on Coumadin because they will just bleed and bleed.  They will only do it if absolutely necessary because they are experiencing severe bleeding often.  They’ve also found that kids who do end up needing cauterization from severe nosebleeds are healed for about a month or two, and then the vessels start bleeding elsewhere in the nose.  His recommendation is to leave Tyson alone for the summer while he’s well and IF the bleeds come back again this winter and we do end up with another emergency situation, then he’d consider doing the cauterization.  BUT this would only be done if Tyson could be off Coumadin for a period of two weeks – to ensure that the vessels are fully healed with ‘normal’ blood clotting factors first, before re-starting Coumadin.  He’d have to get permission from Tyson’s cardiologist first….but we highly doubt that Tyson will be allowed to be off Coumadin for two weeks.  We have to weigh the risks with the benefits…risk of stroke or risk of nosebleeds.  Hmmm…that’s a tough one ;)

So the ENT sent us home with no intervention (we’re always ok with that!) and gave us a slew of tips for nosebleed prevention (which of course we’ve been doing for two years now!) and he says if Tyson can stick it out, it’s safer not to cauterize.  So here’s hoping and praying that our prevention routine will continue to prevent the nosebleeds.  We’re kinda all going with the idea that Tyson’s 911 nosebleed was mainly due to being on oxygen nasal prongs and the dry hospital air.  So, as long as he doesn’t develop any more serious pneumonias requiring O2, here’s hoping and praying we can stay nosebleed free too?!?!


That’s the update for today.  Hope you all are enjoying your summer! 

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