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!

Admitted!



On O2 and IV within minutes of arriving. 
Just wanted to let you know that Tyson was admitted to Headwaters hospital last night. Yesterday his cough got worse, he had increased work of breathing, and he spiked a fever. On arrival at ER his SATs were only 80-81 so he was immediately put on oxygen and an IV was started (after three pokes...eeek!) His white blood cell count was 28 (normal is under 10).

The first night in the hospital is always a rough sleep as the nurses go over his history, set up the needed medical equipment and as they figure out a convenient med schedule. We both didn't get a ton of sleep as we weren't settled in till almost midnight and then it was time for another IV dose at 5:40am so once Ty woke up we both didn't go back to sleep. We are now waiting for Dr Murphy to do his rounds and then make a plan.

Tyson has gone 14 months without a hospital stay - his longest stretch ever!  We were really hoping he could hold off until after the Superheroes Bowlathon on Saturday afternoon so we could enjoy it as a family, but in hindsight I am glad we decided to bring him in. He's had enough fighting for one season. Time to get his lungs completely healed so he can stop coughing and be healthy again.

As you know our family is participating in the Superheroes Bowl for Cardiac Kids today. We've been so excited about this event, especially Tyson!! We've worked really hard on fundraising - over $800! - and I've been very busy with everyone's Ninja Turtle costumes. The whole ninja turtle theme was Tyson's idea.  My Mom has offered to stay with Tyson while Brian and I go with the rest of our kids. She wouldn't even let me argue with her about it!  Tyson hasn't forgotten about the bowling event. But I also haven't told him yet that Grandma is coming to stay with him for a few hours. If he knew we were bowling without him he'd be very upset, so when he asks where I'm going I may have to skirt the topic a little.  He did ask about bowling yesterday and cried when he knew he was being admitted and that he was going to miss out. We'll see if he's forgotten or not. It will definitely not be the same bowling without him since he and other cardiac kids are the whole reason we work to raise awareness and raise money!!  We'll miss him while we're gone :(

Please pray that this is a minor bump in the road and not too long of a stay.

2 comments:

Yvonne k said...

We will continue to pray for you and your family and Tyson. Hopefully this will not be a long stary, but you never know. Get sleep whenever you can. Love, Andrew and Yvonne K

willowsprite said...

Praying for peace during the wait, and praying it's not a long one!