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!

Another Cancelled Cath :(

Tyson's heart cath scheduled for Monday has been cancelled. Unfortunately, a slight sniffle turned into a small cough, which turned into a worsening cough associated by fevers. (We have NO idea where he caught this - all of us are very healthy!) We ended up having to take him in to emerg at our local hospital on Saturday afternoon because he was still feverish, breathing quickly, and was very grumpy and uncomfortable. His O2 sats have been ok, only slightly lower than normal, but his heart rate was high (indicating he's in pain) and he was breathing uncomfortably. The ER Dr didn't think it sounded like pneumonia in his lungs (but didn't feel it necessary to order chest x-rays for some reason.) Tyson was also seen by a respiratory therapist who said the same thing. The Dr sent us home with a prescription anyway because, given Ty's history, it could still easily turn into pneumonia. So we will continue with the ventolin in his nebulizer 4X a day and carry on. Now he is nicely tucked into his bed sleeping soundly. We are thankful that we were able to assess the situation quickly and take him to be seen by a doctor soon enough. We have learned the hard way that when we wait too long to take him in, he ends up being hospitalized at Sick Kids. We do love that place, but we love home even more :)

When I called Sick Kids today to let them know Tyson was sick, the cardiologist on call said that if it was just a cough he could still come in on Monday and be assessed. (Sometimes a cough indicates heart failure and not a cold - in that case they would want to proceed with the cath!) But because it is associated with the sniffly nose and fever, they would have just sent us home if had we come in.
We are disappointed because there is a great deal invested in making preparations for his cath, especially the emotional preparation for me. (I can't remember the last time I've had a good night's sleep.) We were also anticipating receiving some answers as to what is the next step for Tyson. But, on the other hand, we are thankful that Tyson's heart is still healthy enough that this cancellation will not hurt him too much. The timing of a potential new cath date is a concern for us though, with our new baby expected to arrive sometime mid-to-late January. We don't know when Tyson's cardiologist will recommend another date for the cath, but are hoping it will either be in early January or else wait until the end of February or March.
Thanks for all your prayers leading up to the cath. No matter how much we try to avoid the colds & flus of the season, or drown ourselves with Vitamin C and liquid silver, wash our hands, keep Tyson cooped up in the house for 4 weeks, or how hard we pray for God to keep him healthy, God is still in complete control. His ways are higher than our ways. For some reason, this cath just doesn't seem like it's meant to be right now. There are reasons for that, and God will reveal them in His time.
Take care,
Mel:)