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!

Arrival at Sick Kids - Monday, December 1, 2008

"The Lord is faithful to all His promises
and loving toward all He has made."
Psalm 145: 13b

Thank you all for your kind words and prayers in this difficult time. We would like to share with you some of the details that we have learned so far about Tyson's condition.

On Sunday morning Tyson had an echocardiogram (an ultrasound of his heart) at Headwaters in Orangeville, which showed a fairly large hole in between the lower two chambers of his heart. Dr. Murphy also detected an enlarged liver, which may or may not have been connected to the hole in his heart. Dr. Murphy consulted with a cardiologist at Sick Kids Hospital and arrangements were made for Tyson to be transported by ambulance to Sick Kids for Monday morning.

Tyson was transported in a heated incubator and I was able to ride in the ambulance with him, with Brian following behind us in the van. When we arrived at Sick Kids, Tyson was immediately brought up to the Echo Lab, where they completed a one-hour long echocardiogram on his heart. We were given the results immediately and Tyson was admitted to the Cardiac Critical Care Unit.


In short, the results have shown that Tyson has some serious heart complications (defects.) However, we would like you all to know that the cardiologist has assured us that Tyson is going to be ok.Tyson has 4 serious heart defects which will result in at least 3 heart surgeries in the next little while. We will summarize what each heart condition is and what the cardioliogists here plan to do to fix the problem.

First of all, Brian and I feel that Tyson is in the BEST place he could be and the cardiologists and specialists here at Sick Kids are amazing! They are all so knowledgeable and willing to explain things to us over and over until we fully understand. Even though there are still many things about his conditions that we don't fully understand, we will try to explain them to you in a simple way. Brian and I have both learned so much about the human heart and how it works in a span of just a few hours, but we are both on information OVERLOAD so excuse us if we don't make any sense. You can google any of the heart defects below to get an extensive idea of what is going on. There are many websites available that explain it in greater detail.

First of all, there are 4 chambers in the heart. The upper two are called right atrium and left atrium, and the lower chambers are called right ventricle and left ventricle. The two rights work together and the two lefts work together.

1) Coarctation of the Aorta — or aortic coarctation — is a narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body. When this occurs, your heart must pump harder to force blood through the narrow part of your aorta. However, the valve (or duct) that usually closes automatically shortly after a baby's birth, has remained open so that blood can flow more freely through the aorta. (God's grace again!) This would be his first surgery, possibly at the end of this week sometime. It involves putting in a "shunt" to make the aorta function properly.

2) Transposed Great Vessels - There are 2 vessels in the heart (pulmonary artery and tricuspid artery.) One supplies the blood to the lungs and the other to the rest of the body . These 2 vessels have their function confused (transposed) and that needs to be corrected. The vessels are supposed to be criss-crossed but they are not. This can be solved by another surgery which will join one vessel into the other, and take all the blood from the the left side of the heart. Because Tyson has two holes in his heart, the blood is actually able to get to his body. If the holes were NOT there, then his lower limbs would have been lacking in oxygen-rich blood, and thus the limbs would have started to turn blue and he could have gone into cardiac arrest. So we are actually thankful that these holes are there for now. (Again, God's grace!)

3) Ticuspid Artresia: There is supposed to be a valve running from the upper right atrium to the lower right ventricle. Tyson does not have this valve. So no blood can flow from the right atrium to the right ventricle. Surgery on this is not possible because you can't just create a valve there. This is tied to problem number 4.....

4) Hypoplastic RV: (right ventricle) Because of heart problem # 3 (no valve between RA and RV), the right ventricle is very small and not fully developed. (This cannot be fixed - you cannot make it bigger) However, because of the large hole in between the two lower chambers (RV and LV) blood is able to get to the vessels. The final surgery will bypass the entire right side of the heart and then the left side of the heart will do all the work that the right side should be doing.

In short, Tyson's heart is pretty mixed up and it has to work very hard. Tyson's enlarged liver is because the blood is not moving ahead but is getting backed up. We don't fully understand it all yet but in time we hope to be able to understand it better.
Tomorrow morning, Tyson's "team" of experts (cardiologists, specialists, surgeons, etc.) are having a meeting to discuss how to proceed. They will discuss when to do the first surgery and how to go about the following surgeries. The first surgery could very well take place at that end of this week and the next surgeries will hinge on how well Tyson's body responds and how well he recuperates.

Right now Tyson is on monitors to monitor his oxygen and saturation levels (oxygen intake, 80% or 100%, etc.). He is also on thermal regulators which control his body temperature. He is also undergoing more phototherapy because his bilirubin levels were at 310 today (the highest they have ever been yet.) He is still looking very jaundice and he is soooooooo tired because his body has to work so hard to keep things circulating. The cardiologists have also tried several times to put in an arterial line, which will allow them to quickly take blood at any given moment (to prevent them from always having to find a vein in his arm). This arterial line also gives consistent blood pressure. He also has ECG leads stuck to him (round circle things) that gives a constant reading of his heart rates. When we last saw him, he looked very tired and was working very heard to breathe. They may try to give him a CPAP which is a triangular shaped thingy that seals over his nose and expands the lungs. This will keep the lungs partially open at all times, so that they don't have to work so hard to open and close with each breath he takes. If the CPAP does not work, they may have to intubate him. This means that they stick an intubator up through his nose and into his lungs so that the machine can do most of the breathing for him.
Brian and I have a parent room just around the corner from him and we can go in to see him at any time. Our room has a pull-out couch and some tables but it is very basic. We also share a bathroom and shower with two other parent rooms. So we are happy that we have a place to sleep soundly while our son gets the best treatment possible. We are sad to say though, the nobody under the age of 12 is allowed anywhere near the CCCU because they are germ breeders. This means that while Tyson is in CCCU, our kids will not be able to come and visit. Once Tyson has his first surgery, he will be placed in recovery where he goes through "stages" of recovery. At that time our kids will be able to see him.

We hope this answers everyone's questions. We realize you may not be able to understand it all, as we are still trying to sort it all out too. But we are SO THANKFUL that God has blessed us with the kind of technology where specialists can look at an echo of his heart and figure out exactly how Tyson's heart works and then come up with a plan of how to fix it in a matter or hours!
Brian and I are both SO overwhelmed right now with everything that is going on. Sick Kids Hospital is an amazing place for Tyson to be (the BEST place for him!) and we entrust him into God's Almighty hand. Please continue your prayers for him and for us. We are confident that whatever God's plan is for Tyson, He will give us all the strength to endure it!

With love,
Brian and Mel and Tyson

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