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!

February Cardiologist Appointment and Echo

Tyson had another cardiologist appointment last week, including an ECG and an ECHO. He has had so many echos in his life I seriously wouldn't be able to count them all; but for the very first time in his life I was actually really nervous about these echo results. For Tyson's entire life, there's always been another surgery in his not-too-distant future. So if his heart began failing at any time, or his sats started to drop, there was always another procedure which could "fix" the problem. When his heart was overworked as a baby, they planned his 2nd open heart surgery, the Glenn. Once his heart outgrew the Glenn, he moved on to his 3rd open heart, the Fontan. When his pulmonary veins became a problem and interfered with his pressures, they did a sutureless repair. If his sats dropped after the Fontan, they planned to close his fenestration. BUT NOW... they can't close the fenestration because of high venous pressures, and they can't do anything more for his pulmonary veins. So there is no other option for him other than the dreaded "transplant."

The word "transplant" comes with many worries and anxieties for us. It means a very big, very risky surgery. One that Tyson needs to be big and strong for. One that would involve a lengthy hospital stay. One that would once again turn our lives upside down. When I think of transplant, I picture spending months in the hospital waiting for a heart (and possibly a lung at the same time,) then another few long months watching Tyson recuperate. I picture our other kids' lives turned upside down as their brother lays in a hospital bed fighting for his life, while they try to continue on with their lives as normal. I picture them trying to concentrate on their school work during the week and then spending the weekends down in Toronto. I picture myself being torn between Tyson and my other kids and Brian. Quite frankly, I picture a really, really long road. (So you can imagine why I was so nervous about the echo results.)

Anyway, as much as I was nervous about his Echo results, God again gives us reason to rejoice that He is always in control and blessing Tyson and our family over and over and over again. Tyson's cardiologist said that his Echo results were good. "Good" for Tyson means "no change." We're so thankful to hear that!

Tyson now weighs 32 pounds and is 38 inches tall. When the nurse hooked him up to the sats monitor, we were all very surprised to see the number 91! That means 91 % (out of 100%.) He normally sats in the mid-to-low 80s. It was clear that his colour was exceptionally good that day, but to see a child with half-a-heart and severe pulmonary vein stenosis with sats of 91% is astounding! Tyson's cardiologist smiled, shook his head, and said, "I don't get it. But we'll take it." He is continuing to amaze the cardiologists!

We are so thankful for Tyson's good health so far this winter! I was so nervous about this winter season, with all the viruses and bugs floating around but so far he remains in good health. We haven't hit March yet, though. Every March since Tyson has been born, he has been hospitalized with a pneumonia of some sort which required oxygen therapy and IV antibiotics. Last March 2011 he was even admitted into Intensive Care and was almost intubated from the Influenza virus and pneumonia (something we never thought would happen after his Fontan surgery.) Now, mind you, this winter's weather has been a lot like March weather, with the temperatures being so unpredictable and constantly going up and down. And we do seem to have his asthma under control this winter. Whereas last winter he hadn't been diagnosed yet and we didn't have use of the nebulizer at all, so he wasn't able to fight off a cold without help. HOPEFULLY we can get through March without any hospital admissions. I would love to be able to celebrate one whole year without any hospital admissions! That would be a big milestone for Tyson!

So all in all, it was a great cardiologist appointment, and an even better echo, and the best news of all (to me) was his high sats! We're thankful for God's providence and care this winter season. We're thankful that we are enjoying Tyson's health and he is enjoying life at home as a big brother. He loves to help his Mom with "diaper duty" (throwing Addisyn's diapers in the diaper pail.) He loves his little sister and gives her frequent kisses on the top of her head. So sweet ♥

Tyson is in the process of having a wish fulfilled through the Make A Wish Foundation of Canada, an organization which grants wishes to children with serious medical conditions. Tyson qualifies for a wish because of his heart condition and the open-heart surgeries he's had. We wanted to wait as long as possible for his wish to be granted, so that when he is older he will remember his wish experience. But the reality is, we don't know what God has in store for Tyson's future so we want him to have this experience before he's in need of a transplant. When we asked Tyson what he would wish for, he says he wants to meet Sidney Crosby, Spiderman, and Mickey Mouse. He will only receive ONE wish, so he needs to decide whether he'd rather meet Sidney Crosby or go to Disneyworld to meet Spiderman and other characters. As a family, we'd all rather go to Disney, of course! (Merrick might be the only other one who'd care to meet Crosby but the rest of us would love to go to Disney!) We just mailed his very detailed wish forms and are waiting to hear back from his wish granter to continue the process. Ultimately it is up to Tyson to decide what he'd rather do, so we will wait and see what he comes up with. (Please let it be Disney!!!)

Please pray for continued health for all of us, so that Tyson can avoid the hospital this winter :)