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!

Pneumonia Again




Tyson had a very fast and furious pneumonia hit him this week. It came on very quickly with a slight cough on Wednesday, by Thursday night he had a fever and by Saturday afternoon we were sitting in emerg waiting for x-rays. 

The pneumonia could be seen on x-ray and heard by stethoscope, and he has a very wet cough indicating his lungs are full of junk.  Thankfully,  because his oxygen saturations were still fine (90-91 in emerg!!)  they put him on oral antibiotics and sent us home. (YAY!)

Can you please join us in prayer that the oral antibiotics quickly clear it up and we can get him healthy again.  He is not sleeping very well at nights and he is gruuuuumpy.  This is his third time on antibiotics this season.  The last time he was put on oral antibiotics it took a little longer to fully clear and this is concerning because if these oral drugs don’t work, he would need IV antibiotics at the hospital.  We love being home (it’s been over a year since his last hospital stay!) so we’d like to stay here if possible.

We missed out on the Labatt Family Heart Centre Conference this year because of Tyson's illness.  I enjoy this conference so much because it's an opportunity for us to learn more about new cardiac research developments, coping mechanisms for parents/siblings with cardiac kids, as well as support and encouragement from the cardiac community of Sick Kids; all while my kids are off having fun at the crafts, games, and activities planned for them by the nurses and staff of Sick Kids' Heart Centre. This year the conference took place at the Sick Kids' Research Tower and I was so excited to get to finally see this building :(   Maybe next year?

To make matters even worse, remember that bruise that Tyson has on his forehead?  (It's about three weeks old now but it's still obvious enough that they asked about it at the hospital.)  The bruise is finally fading...but today Tyson tripped and fell onto the corner of our piano bench with his face, smacking his jaw hard.  Scraped and bruised on his face again!  I didn't think it would be that important to ice it because hey, at least it's not on his head.  Well, in hindsight, we should have iced it.  It is slightly swollen and it's going to leave a bruise about as big as the one that's finally fading on his forehead.  We're thankful that the point of impact was slightly above his jaw bone; I was worried about damage to his jaw - but he says the bone doesn't hurt and he is eating fine.  Now I'm extra hopeful we don't have to bring him back to the hospital this week - they won't like seeing a new bruise on his face since last time. 

Will you please pray for Tyson, that the antibiotics will work their magic so that he can regain his strength and continue to recuperate at home rather than the hospital?
Thanks!
Brian and Melissa   

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