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 Appt November 28

Yesterday was Tyson's appointment at Sick Kids for an ECHO, ECG, and cardiology clinic.  Everything went peachy :)  His ECHO and ECG remain unchanged from last time in June.  It's always good to hear when there are no new surprises!

I brought up the concern about Tyson sleeping so much at nights.  It started around the time he had his last bout of pneumonia in June.  When it continued afterwards, we passed it off as him taking a while to overcome the pneumonia.  When it continued throughout the summer, we thought it was due to him being outside for long hours during the day being active with his older siblings.  But now with fall here and he is not as active, he is continuing to sleep 13-14 hours every night.  We were starting to get concerned that his heart may be slowing down.  But according to the ECHO and ECG, everything is as good as it can be for him, with no new changes.  The mitral valve is still leaking mildy, and his Fontan circulation is still a little 'off' but as McCrindle says, "It seems to be working for him."  The ECHO report actually said there were no obstructions in the pulmonary veins but McCrindle snickered and said, 'You and I both know *that's* not true!"  LOL

Anyway, to be on the safe side, Dr McCrindle ordered some blood work to make sure there's nothing wrong with any of his other levels that could be causing the fatigue.  Tyson was very angry at me as we walked down to the lab for bloodwork. He scowled and protested, "You LIED to me Mom!" because I had been telling him all day that there would be no needles at today's visits.  Ooooops.  I guess I shouldn't make promises that I'm not sure I can keep.  Since bloodwork was done at 5:30pm, we didn't find out results right away.  But I heard from Dr McCrindle this morning that all the numbers came back normal, and Tyson is just fine.  So we continue to keep a close eye on him, let him sleep as long as he needs to, and we don't need to go back to Sick Kids again for SIX MONTHS!  Yay!

We talked a bit about some precautions that we need to be aware of in preparation for when Tyson starts Kindergarten in September.  Nothing new, just some things to think about and talk about with his teacher and the other staff members.  All in due time. 

Once again, we appreciate prayers for a healthy winter for Tyson.  He was approved for RSV needles again this winter.  We'd appreciate prayers for that too, that Tyson doesn't get too anxious about the needles.  He *hates* needles, and the RSV ones are big and juicy.  Because of his size he needs to have 3 in one visit (multiply that by 6 months of the year....) but I am hoping we can talk the nurse into using a slightly bigger needle and dividing the serum up into two needles instead of 3.  That would be far less trauma for him.

That's the update for this time.  I hope to post pics of our Sick Kids visit sometime within the next few days, so come back soon and check them out.

Melissa

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