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!

Cardiologist & Respirologist Appointments



Tyson went for his regular check-ups at Sick Kids on Wednesday, November 2 to see the cardiologist and respirologist.

Tyson didn't have an echo this time so there isn't a whole lot to report about his cardiac condition. (Other than he still has half a heart LOL.) He now weighs 31 pounds and his O2 sats in clinic were 87. We used to see numbers in the high 80s-low 90s but unfortunately that didn't last long and now at home we often see low - mid 80s again.

Dr McCrindle, cardiologist, made a special notation in his calendar to be available for consultation during Tyson's heart cath scheduled for Dec. 5. Last cath in June he was away on holidays. Again in September he was away, and the scheduled cath was postponed because the cardiology interventionist wasn't comfortable making decisions without Dr McCrindle around. Dr M said he is 100% certain they will be paging him from the cath lab to decide what to do about the fenestration closure. First they will perform a test occlusion (balloon it closed temporarily to watch how his body reacts,) then observe Tyson closely for about 10-20 minutes to see how the closure will affect his pressures. If his pressures remain stable, they will go ahead with placing the metal disc inside his heart to permanently close the hole. This will stop all mixing of red and blue blood (oxygenated and de-oxygenated blood) and help raise his O2 saturations, giving him a healthier winter, and hopefully buy him more time before another surgery. However, if the pressures elevate too much during the test occlusion, then fenestration closure is not possible for Tyson this time. Our hopes aren't set too high that the closure will be a success, because his venous pressures and pulmonary artery pressures are very high due to the stenosis in his left lung veins. So we won't be surprised if they cannot close the fenestration.

Dr M also reiterated that the results from this cath procedure will determine what is next for Tyson. He will be presented to the surgeons again for consideration. Consideration for either another open heart surgery on his pulmonary veins or for transplant surgery. Either way, his little chest will need to opened up once again :( I asked Dr M, "If we know that transplant is inevitable for Tyson's future, why don't we list him for a new heart/lung right now, even if that means he's on the bottom of the list. We don't want to watch Tyson get sicker and sicker and then have to go into such a huge surgery already weak." Dr M assured me that they will not wait for Tyson to be sick before they list him. This upcoming cath will be a deciding factor for what to do next.

Although all this information is not at all new to us, it is still difficult to hear and accept. It's so hard to believe that our little Tyson, who is growing and developing so well right now, has such a sick little heart. He runs around without a care in the world like any other healthy boy, doing all the things other boys do at this age. He's talking a mile a minute, he's outgrown his afternoon nap, and he's completely toilet trained. (Yes, the boy who adamantly declared that "underwear is DUMB!" was toilet-trained within two days!) How can this boy, who looks so normal on the outside, who can for the most part keep up with other children his age, be so sick on the inside? I don't get it either. It's hard to accept. But, as my insightful husband reassures me, "We don't have to accept anything yet. We accept that we don't know." Ok, true.

The appointment with the respirologist also went off without anything new to report. Tyson's asthma is very well under control since he's been on the nebulizer twice a day as preventative therapy. He has caught a few small colds this fall and although he does get wheezy from it, the ventolin and pulmicort are doing their jobs and he hasn't had to be hospitalized from anything so far.

Dr M did stress keeping Tyson away from sick people, especially with his upcoming cath. They won't put him under general anesthesia or intubate him if he catches the slightest thing. So it's officially "lock-down" time for Tyson. He'll only leave the house when necessary.

That's the latest news on Tyson. We'll report more after his pre-cath appointment on November 30. Keep him in your prayers please!



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