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!

Four Healthy Months!

Brian and I were reflecting again the other day, and we realized that since Tyson's last hospitalization in June, he has been a picture of good health!  Whenever someone asks us, "How's Tyson doing?" I always respond, "So far so good!"  We are so thankful for that, and continue to pray that the bugs stay far, far away!  Due to whooping cough going around our church and school, Tyson has been pretty cooped up since the beginning of September when school started. So far the whooping cough is staying away from us.  It has hit some families who are pretty close to us, and it has affected kids who sit right beside my kids in school or on the bus.  I pray for the health of these families too, that they can get through it and put it all behind them.  Being sick is never fun. 

Tyson saw the speech therapist in September, who said he won't need weekly speech therapy sessions at this time.  He continues to monitor Tyson's progress every 3-4 months, and we continue to work on certain language skills and letter pronunciations here at home.  Tyson is pretty receptive to practicing.  Although we think his lisp is really cute right now,  we won't think so if he's still talking like that as an adult ;)


We saw the respirologist in October and spoke about his asthma meds for the winter.  The plan is not to fix what isn't broken, and leave him on Pulmicort twice daily, Ventolin as needed, and Singulair once daily.  I did ask about increasing the dosage of ventolin, because sometimes when he is coughing badly, the ventolin every 4 hours won't always do the trick.  The problem with Tyson is, that an increased amount of ventolin will cause a racing heart.  Dr. Bikangaga says that if he isn't doing well on ventolin every 4 hours, he actually needs to be in the hospital.  


Starlight Children's Charity generously donated tickets for our whole family to go to Wonderland
From a cardiac perspective,  Tyson's O2 sats remain in the high 80s-low 90s and his colour has never looked better.  He has a crazy amount of energy most days.  For the most part, you'd never know he has only half a heart.  He does have the same amount of energy as most kids his age, but he doesn't have the stamina as others his age.  He can only go like crazy for about 10 minutes before he needs to sit down and take a break.  It's amazing how he knows when it's time to slow down. When he knows he's tired, he just plunks his butt down on the ground and takes a break, like it's perfectly normal to do so. 

He has been sleeping a lot lately, about 13 hours every night.  He literally drops into bed at night at 7:00pm and we never hear from him again until well after 8am!  This has me slightly concerned about how he's ever going to get to school on time next year, especially since he needs a nebulizer mask in the mornings, and he take forever to eat his breakfast!  Because we live so close to the busdriver, our kids get on the bus at 7:15 am and they don't get home until 4:45pm.  Oh boy, it's going to be a long, tiring day for him!  I can't even imagine what time he'll need to go to bed at night in order to get enough sleep for such a long school day.  

Most of the time, when a cardiac kid starts to sleep more often and has less energy, it is a reason for concern.  One of the first signs of heart failure is the body starts to show signs of tiring quicker and extreme fatigue.  Even though Tyson is sleeping longer these days, it could also be due to changes in the weather.  And we are not at all concerned about his energy levels!
 
On Thanksgiving weekend we enjoyed a hike through part of the Bruce Trail.  Tyson did well but the hike was very up and down, with lots of dips and valleys, so it was very hard for him to keep up.  Since the trail was too rough for a stroller, Brian hiked most of the trail with Addisyn in his arms, while Tyson rode most of the time on my brother Garth's shoulders.  Uncle Garth tried so hard to teach Tyson his colours as we followed the trees marked with either blue or white paint, but Tyson does not have the attention span for that kind of learning quite yet.  
 
We certainly try hard at home to keep him learning the things he needs to know before he goes to Kindergarten next year.  We are working on his shapes, colours, and starting to do some number and letter recognition.  It's not going so well, but the teacher in me won't give up :)  He is seen regularly by an infant-child-development worker and she is always giving me new ideas to try and new concepts to work on.  He gets assessed every few months and he doesn't seem to be too far behind.  Considering there was a time in his life we wondered if he would ever walk or talk, he's certainly come a long way!  

With his older sister in school full-time and his younger sister not old enough to play yet, Tyson has to occupy himself a little more.  He enjoys helping me in the kitchen baking or preparing dinner, and he *loves* a good snuggle on the couch with his Mom and a few library books.  During the day, he listens to CDs, enjoys listening to books on CD, he plays "spies" on me, he likes dressing up like SpiderMan, playing with Nerf guns, and any sport you can think of he loves.    When I need some quiet time for myself, he enjoys playing Wii or watching Backyardigans, Toopy & Binoo or Curious George. 
   
His appetite is starting to increase slowly.  He now weighs about 34 pounds, which is AMAZING given the fact that he burns more calories than an average kid. His daily dose of coumadin has been 3 mg for over a year and a half....with the exception of after he's been ill or is on antibiotics.  But for the past few months his INR levels have been slowly dropping, indicating that his dose needs to be adjusted due to him gaining weight and eating better.  This is always a very good sign!  We continue to monitor his INR levels at home with the Coagu-Chek and let me tell you how much Tyson and I LOVE this machine!  It is amazing!  We are so thankful to Cardiac Kids for donating this device to our family.  It saves us time going to the lab for bloodwork, and it sure does eliminate the anxiety that comes along with all those pokes.

Speaking of pokes....we got a call from the cardiology nurse yesterday.  Dr McCrindle feels that Tyson would benefit from having the monthly Synagis injections again this winter, to prevent a respiratory virus called RSV, which can be fatal in children with heart or lung conditions like Tyson's.  As a rule, the governement only covers the shots for high-risk infants (who have heart defects, or were born premature, etc.) up to the age of two.  The theory is that after their second birthday they are that much stronger and their lungs are likely mature enough to handle the RSV virus without requiring hospitalization.  Tyson is going to be four years old next month.  I'd love to think he would be strong enough to fight against the RSV virus if he were to catch it, but the call from Dr McCrindle's tells me otherwise.  The cardiologist makes a referral to Marilyn Cranis, and then Marilyn requests coverage from the government (I think it's ODSP that covers it...the injections are about $900 per shot!)   I hate the thought of having to poke Tyson again (and it's not just 1 little needle...we're talking 2-3 because of his size...last year I managed to beg them to use a bigger needle and put the entire solution into 2 needles instead of 3...there is NO way he's going to sit still enough for 3 needles!)  So that's 2 huge juicy needles per visit, once a month, for 6 months....all winter long....*shudder* I hate the idea of it, but I also hate the possibility of watching my son fight for his life in the Intensive Care Unit because of RSV.  So we do what we gotta do.  I don't know yet whether or not Tyson will be accepted for coverage and  part of me hopes he won't be accepted.  That would save us the anxiety of needles.  Maybe this year won't be so bad for him, because he doesn't go for bi-weekly blood work anymore.  Yay for Caogu-Chek!
I was just saying to Brian the other day that Tyson seems to be growing up all of a sudden.  He is starting to listen better at home finally and we can carry on more adult-like conversations with him.  When we say, "Tyson it's time for your mask," he doesn't kick and scream and put up a fight but usually comes right away when we tell him. Maybe because he is more tired, he actually enjoys some down time before bed.  Or maybe because he's getting older and he's growing up and the terrible two stage is finally leaving him....he's almost 4.   He is able to understand logic and reason better now.  He used to protest everything but he does this a lot less these days, and all around he seems much happier.  He's experiencing less anxiety in social situations, and he seems to be more socially mature.  (Except the occasional burp here and there! ;)  We do know from experience that when he is healthy, he is happy. We are so glad that he is getting easier to deal with.  He sure was a handful at times and I'm so glad that his difficult nature is mostly in the past.  *big sigh of relief*

We go back to Sick Kids again on November 28, for his full Echo, ECG, the whole nine yards.  

We are thanking God for good health for the past four months, and we continue to pray that Tyson remains healthy and well all winter long.  The longer he stays healthy and can fight off colds/flus without being hospitalized, the farther away we are from transplant talk!   I'd love to put the t-word far far behind us.  Please join us in praying for a healthy winter, that Tyson can continue to grow and thrive, and that he can remain healthy at home with his family, and especially that whooping cough stays far, far away!  (Or as Tyson calls it: woofing cough.)