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!

Cardiology Update May 2013



Today was Tyson's cardiologist appointment at Sick Kids.  He had a chest x-ray done first, then his one-hour long ECHO, then ECG, and finally a meeting with his cardiologist Dr McCrindle.  The sharp bump we feel under his skin near his incision is indeed a sternal wire, but thankfully x-ray shows it has not dislodged.  Dr McCrindle explained it as being like a twist tie.  After surgery they wire his sternum bones back together, then twist the wires together like a twist tie, lay it down flat, and stitch his skin closed.  The sharp point we feel must be where the wires are twisted and have become slightly raised so that we can feel it under his skin.  Unless it causes skin irritation or redness, it shouldn't be a concern.  X-ray also shows that, even though he’s been coughing,  he doesn't have pneumonia.  We're thankful to hear that!

Tyson’s echo showed no evidence of decreased heart function.  The heart looks good, the valves look good, but the pulmonary veins are still small.  Dr McCrindle wants Tyson to have an MRI to check on their progress.  Tyson has had MRIs on these veins before, as it is the best way to find out the measurements and blood flow from the lungs to the heart, but they’ve all been done while he was under general anesthetic already during his heart catheterizations.  We’re unsure at this point whether or not he will need to be intubated (breathing tube) and anesthetized for the procedure, but he will definitely need some sort of sedation because the MRI procedure will likely be about an hour long.  Either way, it’s unfortunate that he has to be sedated or under anesthetic, because he always wakes up with tummy troubles and he’s extremely irritable afterwards.  But we are thankful that there is a way to monitor and measure his pulmonary veins.  Once the MRI is done, it can take about 3 weeks for results, so we will also see Dr McCrindle about those results.  He wants to see Tyson again for his regular cardiology appointment again in six months.  The timing will likely be MRI in about 5 months, then cardiologist follow-up one month later.  We don’t have the appointment dates for that yet but they will call or mail us the date/time. 
Tyson met a new heart friend today.  Alex's parents and I are facebook friends and we just happened to be at Sick Kids on the same day 





Brian and I are very thankful that Tyson’s echo results were favourable once again.  We’ve had some questions about his more frequent cyanosis (blueness) but it’s possible that the cyanosis is more a pulmonary vein problem than heart function problem. 
Praying for a safe and healthy summer! 



Today we also spent some time visiting a friend, 10 year old Hanna Deklerk who lives in Barrie, ON. Her Mom and I (Alicia Olthoff) know each other from waaay back when, and her daughter had brain surgery last week.  She was originally discharged home on Monday, but returned to Sick Kids again last night due to pain and numbness in her legs.  The doctors have started some new medications as well as more pain meds and it's likely they will be there a few more days.  Please keep Hanna in your prayers as she recovers. 






No comments: