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!

Stomach Flu :(

OF COURSE!  Murphy's law told me NOT to write that last post about how healthy Tyson has been.  But I can't help being so excited that he's been so well.

Well, that is until yesterday.  Tyson came down with a stomach flu :(  On Tuesday he was very 'off' at school and we knew it was either a result of a late Sunday night or that he was coming down with something. 

Wednesday morning he continued to be 'off' and then after lunch he complained of a stomach ache and then the bug overcame him.  Nooo fun.  Especially since his first round happened while we had 5 kids crammed into my sister's van.  Thankful for plastic bags and baby wipes!  Tyson slept off and on in the afternoon and still went to bed at a good time last night.  He slept well through the night except for having to get up twice for more water.  Brian and I are so thankful he was waking up for water.  With any child, there's always a concern about dehydration when they get sick.  But with a cardiac kid, dehydration puts extreme stress on the heart and puts him at risk of all kinds of things like cardiac arrhythmia or even stroke.  So we're thankful he was still drinking well :)  

We kept Tyson home from school today (obviously) and he's been looking pale and 'bluer than normal' so of course I am checking his O2 sats.  They are very up and down so I am keeping a close eye on them.  If Addisyn hadn't just had a stomach flu last weekend, I would be very concerned about his heart health since vomiting, fatigue and cyanosis are signs of heart failure.  (Still always in the back of the mind even when you know/think it's an intestinal bug....) This bug has really been making its rounds, so we're going with the assumption that this is indeed a stomach bug.

Tyson has been sleeping since 1:00pm and it's now almost 4:30pm.  I better go wake him and see if he's ready to be up and around.

Chow for now.  Still praying for a healthy March!

No comments: