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!

Home Sweet Home!

Tyson was discharged from the hospital today at lunchtime!  He did really well overnight without oxygen.  He did de-sat a few times but I got up and rolled him over to lay on his other side and his saturations improved.
We are so happy to have him home again!  He has quite the markings on his arm from the IV being in so long.  The nurse who inserted the IV didn't put any gauze or padding underneath at all, and the plastic caps were taped directly onto his skin.  I really didn't think of it at the time either, and was honestly not thinking that the IV would stay in so long.  But they left quite the cuts on the inside of his arm, and they are red and swollen.  Poor little guy, like he needs any more scars!  LOL  I will have to remember for next time that they should put padding underneath before taping his IV up so securely. 

Thank-you all for your constant expressions of love and support, but most of all we're thankful for your prayers! 

Tyson said during dinner tonight, "I am glad to be home."  ♥

We go to Sick Kids on Wednesday to have him assessed there by his cardiologist, and various other tests.  We will update again after that time.


1 comment:

Aunt Rita and Uncle Jerry said...

Awww? Him saying that, just gets me teared up...I can imagine that little voice saying that.
I am so happy Melissa that God gives you such strength. I know He only gives us what we can handle...I just hope and pray that if I ever have to go through anything like you have been, that He grants me such patience and strength too. We love our kids so much..(and grandkids), and therefor I just can't imagine that little voice coming from one of mine. I remember a long time ago, when Eric was 10 and we found the diagnosis of what was wrong with him. At the dinner table that night, he said "so what did the doctor say mom?". We told him as upbeat as we could, what his MD meant. I myself was heartbroken to tell him and had to fight the lump in my throat. But Eric responded with, "Oh well, God will help me. It will be ok". THat's when I had to pretend to go to the bathroom, and I just grabbed a towel and cried into it. It was his voice, and his assurance, that "God will help me" that got to me. Ohhhhh...man o man Kids can really teach parents at times.
All the best Mel...*hugs*. We hope and pray this is the last of that nasty pneumonia. We will all look forward to reading about his hospital visit at Sick Kids this week.