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!

Tyson's Cardiac MRI - September 20

Tyson was a very brave boy today and he made us so proud by handling things so very well.  He just never ceases to amaze us.  The MRI at Sick Kids went very well today.  We don't have any results yet and it could be a week or so before we hear anything at all, but Tyson was a trooper and showed so much strength and courage today. 

Brian and I decided that we would not tell Tyson any more info than what he absolutely needed to know. If we had told him weeks ago that he would be put to sleep for the procedure or have an IV in his hand, or have to go through a small, noisy tunnel and lay still for an hour, he would have been very anxious and nervous.  His last few memories of IVs involved long stays in hospital and he wouldn't have liked to think about being slid into a small, noisy tunnel.  We didn't want to cause him unnecessary worry (and we really wanted him to sleep well at night too) so for the past few weeks, Tyson knew he was having an MRI and he knew it was to take pictures of his heart but he really didn't know exactly what was going to happen.  He knew that it was a bit of a big deal because his brothers and sisters had to have a sleep over the night before at friends' houses, and we had to leave very early in the morning, but he didn't know he would have to fast or go under general anesthetic.  He had some apple juice to drink on the way down but he didn't really even ask for breakfast. 

When we got to Sick Kids,  we told him that he couldn't have breakfast because he needed an empty tummy for the MRI, and we told him he would be given special sleep medicine through a mask so that he could be sleeping and lay really still for the procedure.  He took the news *really* well and we couldn't have been more proud of how he responded to the information.  He didn't say too much about it but did ask, "Can Mom come with me?" and "You'll be right there?" I told him I would be right there with him while he has the sleep medicine and holding his hand and we'd be there when he wakes up.

Tyson waited patiently for almost two hours without fear or worry.  It helped that there was a Nintendo in the prep room (recovery room.)  So Tyson played Nintendo with his Dad for over an hour until he was finally called in.  He didn't complain once about being hungry or thirsty or scared and he was laughing and having a really good time playing video games with his Dad. 

Once I walked him into the anesthesia room and layed him on the table, he got really scared really quickly.  He kept saying, "I'm scared, Mommy!" and "I change my mind, I don't want to go to sleep."  By the time he had the orange smelling mask over his face it was too late and within minutes he was fast asleep on the anesthesia room table.  I know it's "just an MRI" but the part about leaving your son on the anesthesia table, letting go of his hand and walking away from him *never* gets easier.  It's not easy to watch his eyes as they well up with tears, and the look of panic on his face as he pleads to me with his eyes, "Don't let them do this to me, Mommy!" Thankfully, it doesn't last long and those are memories he won't have because within minutes he's sleeping and the next thing he knows he's awake with us by his side again.

The procedure was just over an hour long and Tyson woke up in quite the tizzy.  He isn't good at being woken up at the best of times, let alone while feeling sick and groggy from anesthesia.  It took about 15-20 minutes of thrashing and screaming and then an IV dose of Gravol to calm him down, and once he actually opened his eyes and realized that we were making plans to take him home, he started to act appropriately again.  Part of his mood I'm sure was the fact that he had an IV in his foot and he probably was thinking he was admitted to hospital and not going home.  We got him dressed and started removing his ECG wires and his IV, and then he snapped out of it and realized he wasn't there to stay for long.  The recovery time after an MRI is much quicker than with a cath because there is less anesthesia involved so patients wake up quicker, and there is no catheter insertion so there's no risk of bleeding.  Once Tyson was awake and had a few freezies and something to eat, we were allowed to take him home.

Overall, we are very proud of our brave boy and all that he has to endure and we are thankful that once again God has provided Tyson with the strength, courage, and peace he needs to sustain his many procedures and tests.  We weren't given any results of his MRI today and it can take a few days to hear anything.  We will likely give the cardiologist a call in a week or so if we haven't heard anything.  We will keep you posted. 
Tyson had to see Mickey Mouse before the MRI.  (Taken with Brian's phone...a little blurry)
Playing Nintendo games made the waiting time very stress-free for all of us.
















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