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!

Respirologist Appointment

We're feeling pretty optimistic that Tyson will have a much better cold & flu season this year than last. I know, I know, summer has only just begun and I'm talking in anticipation of this coming winter! But with Tyson's heart not working the way it should after the Fontan surgery, in addition to the fact that his left lung is in really rough shape, it's hard to not be anxious about what the upcoming cold & flu season will bring.

The respirologist at Sick Kids asked 101 questions about Tyson's past illnesses, when he started on puffers, how they have worked for him in the past, how many times he's had pneumonia, what triggers his wheezing, etc. From there he came to the conclusion that it does indeed sound like Tyson suffers from asthma. In light of what his cardiologist suggested about him needing aggressive lung therapy, the respirologist has prescribed him Singulair, a daily pill which will help relieve the inflammation in his bronchials (asthma preventative.) We are to begin this treatment as soon as the kids start school again and may come home with viruses harmful to Tyson. (Unless he gets sick before that time, we will begin it then.) He also prescribed some more liquid ventolin, to be administered through his nebulizer. One nebule of this ventolin is equivalent to 25 puffs from Tyson's ventolin inhaler. No wonder it worked wonders on Tyson in June when his family doctor prescribed it! The other medication is Pulmicort, a corticosteroid much like his Flovent puffer, used to control asthma symptoms and prevent asthma attacks; but again this is used with his nebulizer so it will be much more effective in controlling the symptoms. The respirologist also recommended that Tyson receive regular RSV shots again this winter, and of course the flu shot. Normally, RSV shots are only available for cardiac patients up to the age of two, but given Tyson's struggles with respiratory illnesses, they are going to apply for Tyson to have them covered again this year too. We'd rather do the RSV shots (which Tyson had for his first 2 winters and he tolerated them very well) than end up in Critical Care. We've seen what RSV can do to healthy children, I don't want to think about what it could do to Tyson!

We also spoke with Tyson's cardiologist, Dr. McCrindle again. He let us know that he put in the order for another heart catheterization to take place within the next 2-3 months. He also wanted to check Tyson's sats (they were 86! We haven't seen numbers that high in a long time!) I also managed to squeeze in a few questions, one of them being, "If, during his next cath the test occlusion goes well, and they are able to close his fenestration, does it still mean he'll need a transplant?" **hope in my voice** Dr. McCrindle hesitated, then wrinkled his nose, then shrugged his shoulders and said, "There are no guarantees. It's too soon to say." *sigh* Ok, so I tried :)

I left the hospital feeling optimistic and hopeful that the new medications will help manage his asthma and when cold & flu season hits us again, we'll be praying that Tyson can stay healthy and well. The longer he can stay healthy = the more stable his sats will be = the less his heart will have to work, and hopefully = the longer the "transplant road" will become.

Thanks for checking in on Tyson! Prayers are always appreciated! (Don't forget to ask for a miracle that the pulmonary vein problems will resolve, that's his biggest issue right now :)

Mel:)

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