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!

Tyson's Heart Cath Cancelled

I got a phone call this afternoon from Tyson's cardiologist Dr McCrindle about Tyson's heart catheterization set for Monday. The cardiology interventionist performing the cath, Dr Lee (who also did Ty's cath in June) spoke with Dr McCrindle today and she is uncomfortable doing Tyson's cath this week because Dr McCrindle will be away on holidays during the procedure. They both feel that attempting a closure at this time would be borderline, because the pressures have likely not changed much since his last cath in June. Dr. Lee would need to make a decision right there in the cath lab, while Tyson is intubated and under general anaesthetic, about whether or not to go ahead with the closure. It would all depend on how his heart and lungs react to the temporary test occlusion they do during the first 20 minutes of the cath procedure. So it would be a case of "should we or shouldn't we?" Dr Lee wants to wait till Dr McCrindle is available for consultation about whether or not to go ahead with the closure, and he won't be back till the end of September. They also feel that there is time to wait because right now Tyson is healthy and doing so well, and his 02 sats are generally sitting in the mid-to-high 80s. (Whereas in June when they planned this cath, his sats were just at 80-81. Since he's been on his nebulizer mask he has been so healthy and not wheezing or struggling at all.)
Brian and I are feeling so relieved about this cancellation. We both wondered whether or not the timing was right for Tyson, since he seems to be doing so well lately and his 02 sats are generally sitting in the mid-to-high 80s. At Sick Kids yesterday he was 90. So why fix what isn't broken, right? If you read my last blog post that I wrote just last night, I expressed a number of fears about this procedure, mainly due to the risks the cath poses, and God has indeed calmed those fears for us today. We've been feeling pretty nervous about having the fenestration closed, because if done prematurely it can lead to serious complications afterwards, but at the same time we prayed "Your will be done, O LORD." God has again shown that His will is the way. The time is not right for Tyson yet.
Dr McCrindle will see Tyson again at his next cardiologist appointment in November and then will most likely make plans closer to December to attempt a closure. In the meantime, once he gets back from holidays at the end of September, he will consult an oncologist at Sick Kids to discuss the possibilities of prescribing Tyson a chemotherapy drug called Gleevac to potentially prevent his pulmonary veins from narrowing even further. There are laws and regulations that must be followed because a cardiologist can't just prescribe a chemo drug to a cardiac patient without reason. Since pulmonary vein stenosis mimics cancer in the way that unwanted cells grow inside the vein tissue, there is a theory out there that suggests that chemotherapy can prevent the cells from multiplying further. It doesn't un-do what is already damaged, but it could stop the veins from narrowing further. Gleevac would also come with risks and side effects (it's a chemo drug afterall) and Tyson would need to be followed very closely with an oncologist to make sure his white blood cell counts stay where they should be and to make sure the risks aren't greater than its benefits. I will update on that once we hear more about if Gleevac is a possibility for Tyson. (I do know that the drug costs $200 per day...so we're hoping Tyson's ODSP benefits will cover it!)
In all this, we still don't save ourselves a trip to Toronto on Monday, because I still have an appointment at Mt Sinai in the afternoon to follow-up on my ultrasound and more bloodwork. But at least it saves our family from being separated again for a night or two, and we can let go of the stress of an upcoming heart cath procedure.
Have a great weekend, ours now looks a whole lot brighter :)

I've posted a few pictures of our kids from the Labour Day weekend. We went to the air show in Toronto and then we enjoyed some rides at Ontario Place. Tyson was in such a good mood that day and loved the water park. It was a really hot day and was wonderful to enjoy some family time before the cold and flu season hits us and we are forced to stay cooped up more.


Kenya (5) and Tyson


Braden (10) and Ty

Merrick (8) and Ty


Cooling off on the last hot day
of summer :)




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