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!

Tyson is Six !

I realize that it's been over a month since our last update, but honestly I have no idea where November went!?!?! And now here we are, well into December and Christmas is only two weeks away.

Since our last update, Tyson has celebrated another birthday, gone for his semi-annual ECHO and cardiology appointment, endured a 24 hour holter monitor test, received his first term report card, and enjoyed his first snow day from school.

Overall his health has been so good this past fall and beginnings of winter season.  He just started with a cold this week but so far his symptoms are as mild/normal as all the other kids in the house.  His nebulizer mask has been collecting dust on my dresser since June and we pray that we can keep it that way.  Tyson has had two small colds since school started in September and was able to get over both colds without using his nebulizer; just regular puffers and lots of lung physiotherapy and deep breathing exercises!  We are all so excited that he could overcome both colds without developing pneumonia and without needing to take antibiotics!


Tyson enjoyed a nice birthday party with his friends in November.  The following day was a PD Day so he could have a later night and sleep in the next day.  He's still in bed early to allow him enough sleep to function and stay healthy.


A few pictures from his birthday party....

The Grade One boys


One of his friends wasn't well enough to come the day of his party, so he joined us the following Sunday for lunch.

HAPPY 6TH BIRTHDAY TO OUR HEART WARRIOR!

 Tyson also had an excellent report card from Grade One and appears to be doing excellent in school, with no learning difficulties so far.  Even in the area of social development, he has matured so much since Kindergarten last year and is functioning very well in the classroom setting.  He even got an A in Phys. Ed!

A few things have changed in our medication and supplement regimen this fall besides the essential oils we started last year.  I took Tyson to see Linda Kennedy, an iridologist and herbalist in our area.  She could see just by looking into Tyson's eyes that he had a heart condition, lung condition, and that something was 'off' with his blood.  (Would you believe that I didn't tell her a thing about why I brought Tyson to see her, and didn't give her any hints as to his heart condition or respiratory problems - just to see if she could tell me...) It was a pretty cool experience and she was able to make some recommendations to improve Tyson's respiratory health.  We began a new herb called Mullein, a natural 'expectorant' taken in capsule form to help fight respiratory problems.  It relives congestion and is also used by some as a natural diuretic.  This would also help Tyson keep fluid out of his lungs and hopefully prevent pneumonia.  We are seeing a huge improvement in his lung health this year.  We're not certain if it's the Mullein or the daily lung physio, but either way he is healthy and we are happy so we will continue with both. 

We also diffuse a protective and respiratory oil blend in his diffuser every night, run the humidifier to prevent nosebleeds (so far only one this season...) rub oils on his feet when he's coughing, he takes his daily Mullein and other asthma meds, and puffers if needed.  I've even been so brave as to try peppermint oil inside his aerochamber instead of ventolin puffs.  If you've ever inhaled 100% pure peppermint oil from doTerra, you know how well it opens up the lungs.  So far he is doing well on it and I like that fact that it won't cause the rapid heart rate that ventolin causes.

Speaking of heart rate, we mentioned the lower heart rate to his cardiologist a few days after his pediatrician appointment.  The cardiologist ordered a holter monitor for Tyson to wear for 24 hours to record the electrical activity of his heart.  We needed to find out if Tyson's fatigue in October/November was due to rhythm issues within his heart, or just the adjustment of going to full-time school.  So the holter was ordered for after his ECHO and cardiologist appointment for November 12.
All hooked up to the holter monitor
  The holter test went ok.  Tyson had to go to school wearing it and he was pretty itchy form the tape and mesh undershirt he had to wear, but we managed to slip one of his cotton undershirts on underneath to relive the itch. 
Doesn't that undershirt look ITCHY?!?!?
 It went well at school and his teacher was very cooperative in recording his activities throughout the day so that the cardiologist could compare his heart rate with the corresponding activities.  We got the results from the holter and the cardiologist says everything looks good and he is happy with that results.  That is reason for thanksgiving!!!!  Post-Fontan kids can often have rhythm problems later on in life and often need a pacemaker because of it.  We're thankful that there doesn't appear to be any rhythm problems and we can continue on with life as normal.

Tyson had his ECHO and cardiologist appointment in November and everything looks good with his echo; unchanged from last time - so that is always good news!!!!  The cardiologist still wants to send Ty for a cardiac MRI sometime before his next appointment within the next six months to assess the pulmonary vein stenosis and look for further degression.

ECHO time

ECG time
We managed to get in a visit with the dentist on the same day too.
Tyson with his cardiologist Dr McCrindle
Tyson being a character with our cardiac nurse, Stephanie

 We love these people so much - they really mean the world to us!  

As much as we love them though, we are happy we get to stay away from Sick Kids all winter long, the Lord willing.   We won't have to go back again until his upcoming MRI in April 2015, with results of this at his next cardiologist appointment in May 2015.  I'm so happy to not have to drive to the city this winter!
And of course, a visit with Mickey Mouse
Last weekend our family enjoyed the annual Christmas party from Starlight Children's Charity.  It was a fun day of crafts, singing, playing pool, eating scrumptious food, and meeting Santa.  I don't have the Santa pics yet but will post them when they get posted to Dropbox.


Enjoying all things crafty

Braden helps Addi with her tree ornament while Tyson works hard on a list for Santa

Tyson writing his first list for Santa

"Dear Santa, I hope you're staying warm.  I would like Splinter and April. Love Ty."

Mailing it away to Santa Claus

Me and Kenya recording our first single "Let it Go" from the Frozen soundtrack

Getting ready to record "Jingle Bells"



What a great day we had!  Thank-you Starlight!

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