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!

ECHO/ECG/ Cardiologist Appointment

Tyson went for his semi-annual ECHO, ECG and cardiologist appointment at Sick Kids his week and things are looking well.  The ECHO revealed no new changes to his condition - all the same issues are still there, but no new concerns have arisen.  We are thankful for no news!!

Dr McCrindle was very brief with us this time because he was clearly frustrated with the new computer system that was just implemented at Sick Kids.  I thought it was quite funny that he didn't even know how to copy and paste using "Ctrl V" but was so used to using the mouse for it (and I admit, I like that method better too) but he was so upset he called the IT guy in to 'fix' his mouse because it wasn't allowing him to copy and paste.  I was able to solve the problem for him and if you know Dr McCrindle, he gave me that little smirk and said, "Clearly you should be doing my job."

 Seriously.  EVERY time we come we HAVE to go see  Mickey. 
My Sick Kids friends will all get that, right? 


 Tyson having his ECHO done - watching tv. 






Tyson met a new friend named Kain.  Kain's Mom and I have known
each other for a while but this is the first time the boys have met. 
Kain had a sedate ECHO done today..... I don't miss those days :/  


Being cheeky when I asked him to smile for the picture.

Tyson also had to have a 24 hour holter monitor again.  Dr McCrindle wants him to have one done yearly now because a lot of post-Fontan kids develop arrhythmia issues over time.  Once he got past the itchies, he got used to it.  Although I don't think it's going to give a very good indication of Tyson's normal heart rates based on normal activities, because we chose the hottest 2 days of the summer to have the monitor on him.  He honestly sat and played board games inside or looked at book, and on Thursday afternoon I let them watch a movie because it was too hot to be outside.  The humidity is not very good for Tyson's heart so I'd rather he stay cool and hydrated inside on days like that.  

Dr McCrindle also informed me that he wants Tyson to have blood work regularly now too.  Another long-term complication of the Fontan is PLE (protein losing enteropathy - google it) and liver issues.  So they want to keep an eye on liver enzymes and albumin levels and such.  

The next appointment is in 6 months again.  Between now and then we'll be back at Sick Kids at least twice.  Once in August for a dental cleaning, and again in September for a nephrology appointment and ultrasound to monitor the cyst on his right kidney.

Tyson has a busy summer planned!  We start swimming lessons next week, every morning for 2 weeks at the outdoor pool in Shelburne.  Then at the end of July we're spending a week up at Grundy Lake to do some camping, fishing, canoeing, etc.  In August Tyson and Kenya will be heading off to Campfire! Summer Bible Camp for the week and I am just as excited as they are!  Since Tyson can't go off to camp without a cardiac nurse (or me) present, I am volunteering as a cook in the kitchen for that whole week!  That way I can be far enough away from him that he can have the whole 'camp experience,' but close enough in case anything serious happens.  It should be fun!

That's the update for today.  Thanks for checking in!

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