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!

Pre-Cath Day, June 21

Tyson's pre-op tests went extremely well today. As sad as this sounds, it really is a blessing that Tyson is so familiar with his "home away from home." The day included a multitude of tests and appointments, including ECG, chest x-rays, bloodwork, meeting with the cardiologist interventionalist fellow, the cardiac nurse, a Child Life Specialist, and his first "official non-sedate echo." He was a trooper! For his chest x-ray, he just wrapped his arms around the chest plate without even being given any instructions, and he was so quiet and still during his echo. Blood work is always a different story but, the LORD willing, that will be the last time he has blood work in a long time. (He won't need the blood-thinners, or the bi-weekly bloodwork that goes along with it, after his fenestration closure!) During his non-sedate echo, he laid quietly watching tv for over 40 minutes, then another 25 minutes while the sonographer wrote her report and discussed the echo with the staff cardiologist. Sick Kids policy is that all children under age 3 be sedated for their echos. (At least for kids with as complex of defects as Tyson's, since the echos are usually quiet lengthy.) We popped in a Franklin DVD and he laid on the bed with his soother and blankie, rolled over to his side when asked to, and lifted his head so they could get at his neck to look at the pulmonary arteries. What a good kid! It has been a blessing in some ways that he gets these echos so frequently because he was so comfortable having her work with him. No more groggy, angry drunk! I think we can kiss the chloral hydrate good-bye! The best part of the non-sedate echo is that he remained in a relatively good mood ALL day because he wasn't fighting the spinning head he would have had if he'd been given the chloral hydrate.


We got to see the "fenestration occluder" today. This is the mesh-like discs that Tyson will have placed in his heart to block his fenestration hole. It is about the size of a small button, made out of nickel and titanium. It can stretch into a skinny cylinder shape to fit inside the catheter and from there the catheter is threaded through his artery into his heart. Once the catheter secures the occluder in place, (I don't even want to think about how they do that!) the round discs dilate, (pop out) blocking the hole, and will remain in his heart forever. His heart tissue then grows around it, but the good news is he will not need to be on bloodthinners because of it. Although he may need to take one aspirin per day for the next six months, the danger of him banging his head and causing bleeding in the brain will no longer be a concern. Surprisingly enough, this small piece of metal costs around $5,000. Not to mention how much the procedure itself will cost. By the time Ty is all good-to-go he will be probably be worth a million dollars! Good thing for OHIP!

It's very likely that we will get to go home the same day as his cath, unless they do more intervention than they anticipate. For example, if they decide to stent his PA or PV, (unlikely) then we may have to stay overnight under observation.

Tyson's surgery is 11:00 am on Thursday, with his cardiac MRI immediately following while he is still intubated and under general anesthetic. I'm hoping we can be discharged and make it home in time to pick our kids up before they have to go to bed, but we'll see what the day brings.

Please pray that Tyson will tolerate the fenestration closure well, that there is no danger of stroke, that the closure will improve his O2 saturations, and that during his MRI they find wide open pulmonary veins so that he won't require further open-heart surgeries.

Mel:)

2 comments:

Aunt Rita said...

Praying for you Tyson! All the best to you and Brian, Melissa for Thursday's surgery.
*HUGS*....how rich we are when we leave all our worries with the Lord. Of course, as humans we fear, and worry, but, when we bring it to Him, we are assured that He hears every word before it's even spoken. He knows our angst, and will see us through. No matter what results lay before us, He will hold our hand and walk with us.And so, he will with you sweety.
Love, Aunt Rita and Uncle Jerry

Joanneke said...

Thanks again for keeping us informed, Mel. We continue to hold you all before God's throne in prayer, especially again tomorrow. I'm sure you never would have dreamed that Sick Kids would become such a familiar place to you! Thank God for a hospital like Sick Kids!!