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 nine 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!
Ok, so this isn't really an update on any changes in Tyson's condition but I am just feeling an increasing urge to blog today because I am feeling the anxiety slipping in again. Tyson has a echocardiogram, ECG, and appointment with his cardiologist this Wednesday. I am really hoping that by then we will have some sort of idea when they plan on doing this surgery and whether or not they are planning one surgery or two. Argh, I just want to know already! It would be so nice to be able to close this chapter of Tyson's life and turn the pages to a new chapter :)
Reflecting on the words from a daily devotional I subscribe to, which focused on Psalm 94, I am overwhelmed at God's presence near me and within me. The comfort He brings when I am under siege, the strength He offers when I am weak, the courage He gives when I am under attack, and the hope He instills when all seems hopeless - - these gifts of His presence are precious to me. Without His presence I would not know where to go or why I am here.
If you are still reading this, you by now know that I need your prayers. Prayers that God will grant us His peace, and that He will grant us all the patience we need as we await answers. Tyson, of course, needs your prayers too. Pray that God will continue His goodness and grace towards our little guy, that he can continue to travel on the road that he is on, and that he can continue to grow and develop the way he has been :) God is so good!
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.
Tyson is scheduled for his heart catheterization on Thursday, August 5th. We will be going down to Sick Kids on Wednesday for his pre-op tests: chest x-ray, blood work, ecg, signing the consent form, etc. His heart cath is scheduled for 8 am on Thursday.
To remind you all, a heart catheterization can be both investigational and interventional. People who need a type of heart surgery like having stents put in, or need balloon angioplasty, have it done through a heart catheterization. Tyson's heart cath is investigational, in preparation for his Fontan surgery this year. If however, they find any collateral veins that need coiling, they will do this during the procedure and it then becomes an interventional procedure.
The heart cath involves sending a catheter into his heart through the artery in his groin. The catheter is carefully threaded through the artery to Tyson's heart and then a dye called "contrast" is injected into his heart. The cardiologists can then measure heart pressures, oxygen levels, and gain information on the structure and function of the heart in preparation for his Fontan surgery. Tyson will be intubated for the procedure (breathing machine) and will also be under general anesthetic, with the possibility of an overnight stay at Sick Kids, depending on how well he handles it.
My computer is currently at the shop getting fixed (again) so I am not sure when I will be able to post an update. Hopefully I can sneak away some time on Thursday to give a quick update.
Please pray that the heart cath will give the cardiologists the desired information in preparation for Tyson's next open heart surgery. Please also pray that God will grant us His peace and keep us calm in the days, hours, and minutes leading up to the procedure. It's always so difficult letting go of Tyson and letting them take him from my arms. Hopefully things go well, and they don't find anything too pressing that needs immediate repair, so that he can be in my arms again soon.