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!

Our Little Heart Warrior Just Keeps on Fighting!

Yesterday's appointment at Sick Kids went very well.  Tyson's ECHO looked good, unchanged from last time!  This is reason for great rejoicing!  His chest x-ray and ECG also looked very good.  Tyson also had blood work done, which showed his albumin levels are back to normal.  We breathe a sigh of relief on this too, since low albumin levels could mean the start of PLE.  Dr McCrindle doesn't think he would be of greater risk of developing PLE even though his levels were low for a while, since he believes it was the pneumonia infection that caused everything to go out of whack.

Tyson's INR level is still high, so we have to hold his coumadin for tonight.  We have the pleasure and luxury of being able to check his INR level from home now, since his CoaguChek machine was delivered to us yesterday and the thrombosis nurse trained me on how to use it!  (It is fairly similar to what a diabetic uses to check his glucose levels.)  It is very simple to use, and we're thankful that we can keep a very close eye on Tyson's INR levels at home. His level has been changing over the course of the past week due to the infection and antibiotics, and it can take a bit to get back on the right dose of coumadin.  Having the CoaguChek machine eliminates the need for regular blood-work to get him back on track (usually every 3 days once he's been sick....and bi-weekly once his dose is adjusted correctly again.)  Tyson is happy he doesn't need to have so many needles any more :)

 ♥ THANK-YOU SO MUCH TO MEGHAN AND JEFF FROM CARDIAC KIDS FOR FUNDING THIS FOR US!  WE ARE EVER SO GRATEFUL! ♥

The appointment with Dr McCrindle also went well.  Tyson was in a very good mood and he seems to be back to his normal self again.  He has also been eating better too, which is great because mealtimes have always been a battle with him, and Brian and I were about to give up.  His appetite yesterday was pretty crazy, in a good way!  His heart rate has worked its way back down again (indicating that he is getting over the infection nicely and is no longer dehydrated) and his sats are working their way back up again.  90 % today!

We're so thankful for the positive reports we could receive yesterday, and relieved that most of the changes in his blood work and chest x-rays were "just" pneumonia.

God is so good!  Through His strength, Tyson keeps on fighting his battle.  Way to fight, Mr. T, our brave little heart warrior!



2 comments:

Aunt Rita and Uncle Jerry said...

SO appreciate the updates Melissa...all our prayers are answered yet again. Keep truckin' little man!! You ARE for sure a fighter...

Tanya said...

Happy happy happy for you! Praising God with you and for you! Now go out and enjoy your long weekend with your family :)
T