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 11 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!

Wednesday, April 29th


Tyson had his appointments today at SickKids. He had an echo, ecg, holter monitor and a meeting with his new cardiologist Dr. Emilie St-Jean-Michele.  The good news is that his echo hasn't changed since November which means his heart function hasn't changed, so that's very reassuring. Dr. Emilie says it's possible that the Fontan pressures may have changed and an echo doesn't pick up on heart pressures so she wants to run a few more tests, specifically a stress test and an MRI. The stress test is the best and least intrusive indicator but with COVID, they aren't doing stress tests right now (it's too risky for staff because it involves mouth pieces in patients' mouths and with droplet precautions, they've discontinued stress tests for now.)  She sent Tyson for some blood work because that could also give some indication of his pressures changing.  Depending on the results from today's blood work, the stress test and MRI could be a couple months away.  If she finds something alarming with his bloodwork, the tests will happen sooner than later. 



As you know, the COVID outbreak at SickKids is a concern for us but I have to say that the safety precautions at the hospital were very good.  We felt extremely safe with the extra measures that they're taking to stop the spread of COVID there. Security at the entrance, health screening, new masks given to everyone (even though I had just put a brand new one on!) only 3 people in elevator at a time, everyone was wearing masks, and all Tyson's appointments were done in the same room to minimize movement around the hospital.


Dr. Emilie has also referred Tyson to the Fontan clinic at SickKids which  specializes in post-Fontan care and complications. This clinic offers more expertise because they stay more up to date with Fontan research and they specifically see only single ventricle kids like Tyson.  This is very reassuring as well because we know he will be seen by doctors who know a lot about his particular physiology and there is less chance of something (like liver issues or PLE) slipping through the cracks. Dr Emilie is actually one of the physicians in the Fontan clinic so thankfully it won't involve any extra appointments for Tyson. She specializes in heart function and Fontan dysfunction so she assured us that Tyson is in very good hands with her.  She sounds amazing.  The one thing I noticed is that she gives a lot more information than our other cardiologist did, I found myself having to ask a lot fewer questions today :) 

We are home now. Tyson has to wear the holter monitor for 24 hours.  He has done this test before and it's always a bit of a challenge because he gets SO itchy from the tape and it's uncomfortable to sleep.  I fully expect him in our bedroom in the middle of the night. Thankfully it's only for one night! 

So while we do have some good news today, we have to wait till Tyson gets these other tests to find out if there's more going on.  For now, we rejoice that there doesn't seem to be a decline in the actual function of his heart and we will keep you updated as we hear more.