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!

Respiratory Tract Infection: Friday, March 12, 2010

Tyson has been admitted to Sick Kids again. Over the last week his colour has not been good, he's been very irritable, not sleeping well, and has a wet cough. He also shows increased work of breathing when walking, running, and standing from sitting position. A lot of grunting and groaning as he exerts himself. This can be the normal progression of a child with heart disease who is awaiting the next stage of surgery. However, at this point we always need to watch out for signs of congestive heart failure being so close to the Fontan surgery. The combination of all these symptoms worried us, so we called Sick Kids. We made arrangements for Tyson to be seen by a nurse in cardiology. (We didn't want to go to the local ER because Tyson is just too complex for them to deal with and we most likely would end up at Sick Kids anyways. The doctors and nurses freak out because they don't know what to do with him, both Tyson and I would have lost an entire night of sleep, only to be sent to SK in the morning!) This way, we got a bit more sleep at home (sort of) and were given the best care for him right away.
During the nurses's assessment, she noticed that he was much "duskier" in colour than at his last appt on Feb. 17, he sounded congested, and his sats were in the high 60s. At his last echo on Feb 17 they were 80-82. So sats in high 60s is not good! There is something going on, we just don't know what yet. He had a chest x-ray which revealed some fluid in his lungs. The x-ray cannot determine what the fluid is, how long it's been there, or if that is what is decreasing his sats. Tyson also had some bloodwork which revealed slightly elevated white blood cell counts, indicating that he is fighting something. It's unknown at this time whether it is a viral problem or a bacterial infection. He is on oxygen right now, and will be getting Lasix to help drain the fluid in his lungs, and an antibiotic to get on top of an infection, if it is indeed a bacterial infection.
He seems happy enough, although he hates when anybody unfamiliar enters the room to poke and prod him. Right now he is sleeping, so I am able to write a quick blurb. But please don't count on regular updates, it will be very difficult to leave Tyson at this stage. He is in the same type of crib as he has been in before, but the railings raise way up so it's a big play pen for him. This afternoon he quite enjoyed rocking it back and forth and feeling it slide across the room (even with the brakes on.) He's got quite the personality. He's also the only 15 month old I know who knows exactly what to do with hand sanitizer. LOL He rubs his hands together so nicely!
Despite the fact that his sats are low, his colour is kind of blue, and he's coughing, he is actually quite happy. He's not in ICU or intubated, he's just on the ward floor, but he'll be here for a few days at least. That is providing that the low sats are due to infection. If he doesn't improve by Monday, and his sats don't improve, they will do another echo to see if it is a heart problem.
Blech, all this fun all over again. And just as my children begin their March Break. (Last year we were stuck here over Christmas holidays, New Year's Eve, Easter weekend and May 24 weekend.) Thankfully, Tyson has been pretty healthy ever since his surgery in May, and we do know Who is holding Tyson in His hands.
Please pray that Tyson heals quickly and we can go home soon!
Mel:)

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