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!

MRI & ECHO Results Day...

It doesn't matter how old your cardiac kid gets or how well they're doing, I think as parents we will *always* be nervous for the cardiology follow-ups. The 'what ifs' can be haunting. Tyson has been doing really well, seeing cardiology every 6 months, and he has yearly cardiac MRIs to check on his heart function and monitor the status of his narrow pulmonary veins. His heart function has been (very slowly) regressing and his pulmonary veins are under careful scrutiny. Every year when I ask the cardiologist for a copy of the MRI report, he willingly emails it over. It gives me time to read the findings, work my way through the emotions that come along with any changes, and then know which questions to ask when we see him for follow-up. This year however, when I emailed our cardiologist for the report, he said he is "reluctant to forward a copy of the MRI and echo reports until I have reviewed them with you and also examined Tyson." 

!?!?! 

This happened the third week of April....and I have been on pins and needles ever since. I haven't had horrible anxiety like I used to years ago when Tyson was much younger because now I have some wonderful essential oils that help me with this, but even still it's not easy waiting and wondering why he would suddenly decide not to send us the reports.  The 'what ifs' are sometimes consuming but if there's one thing we've learned in this heart journey we're on, it's to always look at the 'now.'  Right now, Tyson is doing great and from a lung-health perspective, he's had his best winter ever!  Only on antibiotics ONCE all fall/winter/spring!  That is amazing progress!
Still, even though Tyson is doing well and there haven't been noticeable changes in his activity level, I'm still feeling nervous. Today is the day we find out if there really is something to be concerned about, or if Tyson's cardiologist was just being "Dr. M." 

I will keep you all posted by adding to the bottom of this blog post.  
Melissa 

So today's news is good and .... well I'm not really sure if the other news is considered 'bad' news.  At this point I don't know yet.  

The good news is that there is relatively little change in Tyson's heart function.  The same concerns with the shunting, kinked SVC, leaky mitral valve, and severe pulmonary vein stenosis are all still there.  We didn't really think they'd go away ;) 

One thing that was noticed on the MRI in April that may be a concern is that Tyson has a cyst/mass in his right kidney that they want to investigate with nephrology. The cyst was there when he was a baby, I remember, but apparently then it was very small and not a concern. At his last MRI a year ago it was 12 mm in size and is now 22 X 22 X 24 mm.  So Dr. M wants Tyson to have an ultrasound of his kidneys and then a follow-up with a nephrologist to investigate if intervention is needed.

At this point I have no idea what this means, but when I asked if it was possible that it was a cancerous tumour, Dr. M said it's highly unlikely but that he's not a kidney specialist he's a heart specialist.  I do know that 24 mm seems to be a fairly large mass to be on such a small kidney.   Tyson will have an ultrasound and appointment with nephrology in the next few weeks and we will update you when we know anything more. 

Just add another specialist to the list of departments we visit at Sick Kids, no biggie ;) 

Thanks all for your thoughts, prayers, texts and emails throughout the day.  We feel your love.  
Melissa

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