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!

Cath Day August 5, 2010 - Update # 1

Yesterday at pre-op we were informed that Tyson will also be having an MRI done while he is under anesthetic for his heart catheterization procedure. Brian and I signed the consent form for this MRI a few months ago and mailed it away, but hadn't heard any confirmation about it until yesterday. (In the hospital world there are always unexpected surprises and you just have to brace yourself and rollwith the punches.) Now is as good a time as any to have the MRI since he needs to be intubated and under anesthetic for the MRI. It is an hour procedure, and the heart cath will take at least an hour as well. We said 'good-bye' to a very frantic and crying little boy at 8 am this morning and were told to expect at least 3 hours of waiting. Tyson sooooo knew something was up when they put him in the gown....and the anesthetist had to peel him from my trembling arms. That moment will NEVER get easier.
Also, we were told yesterday that during Tyson's last cath in May 2009, they did find some small collateral vessels but were too small to do anything about it. If they find today that these vessels are growing and are causing his blood to flow in places where it should not go, they will coil them off today. If the collaterals are taken care of today, it will make the Fontan surgery easier to perform. This is a risky procedure...anything can happen to these coils as they can slip from the catheter during embolization and can fly off into the body somewhere, or into the brain causing blood clots, stroke, or even death. Eeech, I hate thinking about those possiblities and am thankful that they tell me that these events are rare. Praying for steady hands and positive results.
Also, the catheter is entering Tyson's heart through an artery in the groin (not a vein as previously thought) as well as through a vein in the neck. This means a 6 hour recovery time instead of 4 hours like last time....because entering an artery can cause greater chance of bleeding. The reason they are entering an artery is because Tyson is missing his tricuspid valve between the right atrium and right ventricle. So they have to either enter a vein and take the loooong way around the heart, or enter an artery and arrive there more directly.
So now we wait.... and wait.... and wait...but in my head I am singing the words of Psalm 121.
Psalm 121
1 I lift up my eyes to the hills— where does my help come from?
2 My help comes from the LORD, the Maker of heaven and earth.
3 He will not let your foot slip— he who watches over you will not slumber;
4 indeed, he who watches over Israel will neither slumber nor sleep.
5 The LORD watches over you— the LORD is your shade at your right hand;
6 the sun will not harm you by day, nor the moon by night.
7 The LORD will keep you from all harm— he will watch over your life;
8 the LORD will watch over your coming and going both now and forevermore.

1 comment:

Mel said...

Praying for you all!! May God give the strength and trust that you need. Love you seesta!!