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!

CoaguChek

Very very soon we will have the privilege of being able to check Tyson's INR levels from the comfort of our own home!  We are so excited to announce that we will be getting a CoaguChek self-monitoring system, funded completely by Cardiac Kids!  (See their website www.cardiackids.ca.  If you click on "Meet the Cardiac Kids" you will see Tyson's story featured.)

So for those of you who don't know what the CoaguChek system means to us, 

IT MEANS NO MORE BLOOD WORK TO CHECK TYSON'S INR LEVELS! 

This is super exciting to us! Because Tyson is on a blood thinner, he has to have blood work every 2-3 weeks to monitor his INR levels and make sure he is on the right dose of coumadin (warfarin.)  Too little coumadin and he runs the risk of blood clotting around his fenestration in his heart, which could cause a stroke.  Too much coumadin and his blood won't clot quickly enough and he could bleed out...especially concerning if he has a head injury while his INR level is too high.  This could cause bleeding in the brain...)

The CoaguChek system is much like the AccuChek for diabetics, involving a finger prick to check the levels.  It is a rather expensive device, not to mention the cost of the individual test strips, and it is not covered by Tyson's ODSP health plan.  Since coumadin was supposed to be a short-term medication (6-12 months until fenestration closure,) we never really thought about looking into CoaguChek and were just continuing with regular blood work.  But now that we know his fenestration cannot be closed, we've been told that he will be on coumadin for the rest of his life.  Blood work every 2-3 weeks means he needs blood work about 20 times a year  for as many years as he's living.  That's a lot of blood work for a little guy over the years! We're also concerned that the endless pokes will weaken his veins, making it harder and harder for them to access them.   

We asked Tyson's CCAC case manager to look into where we can get a CoaguChek and there is only one certified pharmacist in the area that can sell the device and train us how to use it.  You need a special prescription for it, you also need to be trained on how to use it, and not just any pharmacy can actually purchase the device.   The pharmacist works at Brampton Civic hospital and he is willing to come to our house and give us the special training on how to use it.    

So now we are waiting for Tyson's Thrombosis Dr to get back from holidays so she can prescribe the CoaguChek.  From there, she will fax the prescription to the pharmacy in Brampton, and they will bill Cardiac Kids directly.  We won't even have to see the bill!  The CCAC case manager said she will also ask around to other foundations to see if anyone can help us cover the cost of the test strips too, since they are also pretty expensive.

We are so blessed to not only have a great health care system in Ontario, but we also have access to some wonderful organizations that help us cover the costs of Tyson's medical supplies and equipment!   God is so good to us and indeed He takes care of us!

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