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!

HAPPY HEART DAY!

February is Heart Month.  February 14th is Congenital Heart Defect Awareness Day.

All month long, I try as hard as I can to raise awareness about the worlds' #1 birth defect.  Congenital Heart Defects are the world's #1 birth defect, killing more babies each year than all childhood cancers combined.  In Canada, 1 in 100 babies are born with one of the 35 known types of CHD.  That's 100,000 Canadian babies every year.  Of these babies, 4,000 of them will not live long enough to celebrate their first birthday.

We've been blessed with five years with Tyson but it hasn't always been an easy road.  We want to raise awareness, so that other families who may be affected by CHD some day might find support.  CHD certainly has changed our lives and we look at life so differently now than we used to.  I wrote an article for the Shelburne Free Press on what it's like to live affected by CHD, and not only did they print the article, they also published an article about Tyson and CHD to help us in our quest to raise awareness.
I stopped in at Foodland this afternoon to buy a few extra copies, because I’m sure my kids want to take a copy to show off to their friends in school.  When I got to the check-out, I asked the cashier if she sold the Shelburne Free Press and she said, “Yes, here it is.  You should see it, they’ve got the CUTEST little boy on the front cover.”  And when I saw it, I kinda giggled a little and I said “Oh my goodness!!”  And she said, “I know, isn’t he sweet?!?!”  And then I told her (almost crying) “That’s my son!”  The cashiers were oogling over him :) 
I was shocked and thrilled to see Tyson's beautiful glowing face plastered on the front cover of the newspaper!

The caption under his picture reads "Have you ever met a living miracle?  Meet Tyson Kottelenberg!"


If you're interested in reading the article, it can be found here


I was SO impressed with how the reporter portrayed Tyson's story in such a positive and accurate way, and happy that she didn't change any of our words to suit her own tastes. (That was done by another local paper in the past and we were very disappointed.)  I wrote her a personal email, thanking her for her beautiful portrayal of Tyson's life and how her article warmed our hearts and brought tears to my eyes.  I told her how much our family will forever be grateful for the light she has helped shed on CHD and the awareness she helped raise on our behalf.
She sent me an email back saying, "I am not certain how to thank you for your kind words. I will be framing your email. I realize that journalism is intended to be non-bias, but I have never been able to write about people without sincerity. I actually care and everyone's story feels a little like I'm on their jouney with them, so I try very hard to be their accurate advocate.  In saying that,when writing your article I think you should know I was keeping your son's journey close to my heart,and here's what I was hoping to accomplish: The day after the article, when people are talking and sharing, it is my hope that Tyson would have a smile on his face from ear to ear, that his siblings would be bragging about their little brother in the paper, and that you and your husband could relish in the joy of your wonderful family and the power of your faith, even if you are exhausted, the moment belongs to you and your family. If that happens, then I will have accomplished what I was intended to do in this life.
Reading your email made my husband and I very happy for this day.  I hope today is a great day for all of you. I wish you continued strength. I admire your resiliance. As a mother, I know some of the experience is difficult. Not sure what religion you follow, but I will be keeping you and yours in my prayers.  Your journey is precious, unique as Tyson, and what life is all about, life and faith.
I wish you and yours all the very best of the best of everything.
If I can do anything for you in the future, please let me know.
Thank you so much for your candid, frank conversation and it's a pleasure knowing you and your wonderful little miracle.
All my best wishes and Happy Congenital Heart Defect Awareness Day!
Alex Sher - Shelburne Free Press." 

Bless her heart :)


Me and Tyson witnessing Mr. Ed Crewson signing the official declaration. 

It took a few shots before we could get the perfect picture.  Tyson was in a very goofy mood.  Here are some of the others shots.









Here follows the article that I wrote for the newspaper.  It is a brief story about what it means to be a "Heart Family."
It was printed in the Shelburne Free Press alongside the picture of Shelburne's Mayor Ed Crewson signing the official declaration of February 14th as Congenital Heart Defect Awareness Day.

Being a Heart Family 
by Melissa Kottelenberg



In November 2008 when our son Tyson was born, our world changed forever and we became a ‘Heart Family.’  I already had seven years’ experience being a ‘Mom’ but being a ‘Heart Mom’ is different.  It’s not better, it’s not worse; it’s not inferior or superior.  It’s just different. 
What does it mean to be a Heart Mom?  Being a Heart Mom means never looking too far ahead in the future, but trying to live each day in thankfulness and praying you get to enjoy many more.  It means taking things one day at a time, and some days it means taking things one hour at a time. It means preparing for the worst, and hoping for the best. 
Being Heart Parents means we had to brush up on our knowledge of the heart anatomy and how it works, because in three short days our newborn son was having his first of three palliative open-heart surgeries.  We had three days to try and understand what the cardiologists meant when they told us ‘your son has very serious, complex congenital heart defects.’  We had to try to understand the complexity of his heart and what the surgeons planned to do to help, and then try to mentally prepare ourselves to lay our newborn son on the operating table so that the surgeon can stop his heart, open his sternum, and re-knit his tiny, strawberry-sized heart.   Being Heart Parents means nervously waiting hours in the surgical waiting room, hoping and praying that the surgeon’s hands are steady, praying that the heart and lung machine will keep our son alive so that he will be given back to us again when it’s over.  It means spending hours by his bedside, watching him fight for his life...on life-support, with so many tubes and wires you can’t even count them, with monitors and machines beeping constantly. 
Being a Heart Family means learning and developing a new kind of ‘normal’ when we finally get home from the hospital.  It means learning and administering several different medications.  It means low-fat feeds, pumps, NG tubes and reflux.  It means needles, X-rays, ECHOS, ECGS, antibiotics and IVs.  Blood thinners, sedation, MRIs, heart caths, stickers and bravery beads.  It means that hospital visits aren’t scary at all, because in a sad sort of way, it kinda feels like home. 
When he sleeps too long or he doesn’t answer immediately when we call his name, we worry about cardiac arrest or stroke.  If he drinks too many fluids, it could put undue stress on his heart.  If he doesn’t drink enough, he could dehydrate and be at risk for a stroke.   Being a heart family means monitoring daily fluid intake, and always watching and monitoring sleep patterns, behaviour, colour, and activity levels; checking respiratory rate, heart rate, and oxygen levels.   Does his cough sound wetter today than yesterday?  Is he coughing because he has a cold or is it the start of heart failure?  Is he looking bluer today? Does he look puffy?  When was the last time he went pee - is he retaining fluids?  Did he meet his required daily fluid intake?  Being Heart Parents means analyzing every little cough or sneeze. And trying not to worry, trying not to expect the other shoe to drop.   It means owning medical equipment you never knew existed like pulse oximeter monitors and CoaguChek machines.  It means owning an AED and praying you never have to use it.
Being a Heart Family means sometimes spending Christmas, New Year’s or long weekends in the hospital.   Being the sibling of a heart child means learning to roll with the punches,  knowing that we can never etch our plans in stone because they are bound to change in a heartbeat.  They develop an early understanding of life and death, heaven and Jesus, and have experienced the truth that God always carries us through.  Being a Heart Family also means never taking a single day for granted and counting each and every little blessing.  We make the best of our quality time, because we never know when our time will run out.  It means rejoicing over all the little milestones that maybe we’d otherwise take for granted.  And thanking God every day for His grace and mercy, acknowledging that it’s all because of Him that we have the blessed opportunity to know and love: a living, breathing miracle. 
by Melissa Kottelenberg

And finally...some pics of our family on CHD Day.  Happy Heart Day Everyone!  


February Update



Tyson has been doing relatively well so far this winter.  He has dodged the hospital a couple of times already, and thankfully cold & flu season is halfway over.  Brian and I were able to get away on a holiday for a week while Tyson was at his healthiest.  The reason he was super healthy when we left was because he got pretty sick a couple of weeks before we left, so he had just completed a round of antibiotics before we left.  We are thankful that he squeaked by (narrowly – twice) without being hospitalized.  The oral antibiotics took a little longer to work their magic this time around, which is why we say he narrowly missed a hospital admission…twice…but they finally did work and his lungs were clear when we left for our trip to Dominican Republic.  It’s been over 13 years since Brian and I had a week away without any children.  Tyson stayed with my sister Melanie while we were gone and by all reports, he was well-behaved and very healthy while we were gone.  Our older three kids were at family or friend’s houses, and Addisyn stayed overnights with my Mom & Dad and then went next door to my sister-in-law Lea’s during the mornings that my Mom worked.  Everything went well from what we hear and I didn’t even worry about Tyson or Addisyn toooo much.  

We had an awesome trip.  It was great to get away, to enjoy the beautiful sunshine, to flake out on the beach or by the pool, and not have to cook or clean, discipline or admonish.  We even finished our sentences for an entire week without being interrupted by children.  I am also pleased to say I read an entire book that week and got half-way through another one while we were there (and I have yet to read a single page since we got home…might have to go back to Dominican next year to finish that book…)   Brian and I both feel so blessed that we had opportunity to go.  The resort we stayed at was amazing, the food was fabulous, and the company was great too.  Now it’s back to reality in the great white snowy north.
This was the view from our balcony

View from balcony


Zip-lining Adventure!!!  (Frustrating, but I can't get this picture to rotate!)

On Wednesday we toured around the country and visited a Dominican school as well as a family's home
Drinking Coco-Locos
The gang
Me and my awesome hubby

Tyson’s INR level has been fluctuating a bit in the past few weeks since we got home.  It was a little on the low side when we left for our trip, which is actually ok since at least then we knew Melanie wouldn’t have to deal with nosebleeds on top of everything else.  It was low again when we got back home, so we adjusted his dose, then he caught a stomach bug and his INR level skyrocketed…so now we’re tweaking his dose to get it back to our target range of 2.0 – 2.5. 
Tyson had a cavity filled at Sick Kids at the end of January.  I wasn’t able to stay with him this time since we were also there with Addisyn, who needed sedation, so Brian was with Tyson this time.  Tyson was given nitrous oxide (laughing gas) through a mask over his nose during the dental procedure.  Brian said that Tyson did amazing!  He was so relaxed and didn’t flinch with the freezing needle, and just laid there calmly for the entire filling.  The dentist said it was quite deep but he was able to do a thorough job fixing it because Tyson was such a champ.  We are so proud of him and how far he’s come with respect to the dentist!  Ever since we started seeing a dentist at Sick Kids, Tyson has been much more relaxed about it.  This is probably because Sick Kids still feels like home to him in some ways.  Everyone there is so good with him.  We truly are so blessed to be so close to an amazing hospital.

Tyson being a Champ at the dentist.  (Again, thank-you Blogger for the sideways picture!)

Speaking of Addisyn’s appointment, she had to have an EEG on her brain.  For over a year she’s been having these weird ‘episodes’ where she crosses her legs, holds her breath, bears down, gets red in the face, and sometimes can seem to tune us out completely.  Brian and I think she’s having some sort of pain in her abdominal region, or possibly cramps in her legs, and she’s had several tests (urine sample, blood work, ultrasound) to check her bladder and kidneys but nothing has shown up.  Since Addisyn does this very frequently, and we were able to capture some of her episodes on video, we showed them to both the family Dr and pediatrician.  The family Dr referred her on to the pediatrician, and Dr Murphy wants to rule out seizures as a possibility.  So last week Friday brought back all sorts of horrid memories as I had to deal with sedating a child with chloral hydrate again.  Tyson used to have chloral all the time when he had his echos at Sick Kids, every 2-3 months (or more if he was sick) until he wabout about three years old.  There are few things in life I hate.  I know that hate is a strong word.  But I can tell you two things that I hate:  Coumadin and chloral hydrate.  
Addi sedated during her EEG

When I say to you that my child has to be sedated with chloral hydrate, you probably picture them drinking a medicine and drifting peacefully off to sleep.  Let me tell you that this couldn’t be farther from the truth!!!  They do *not* lie quietly in my arms as I rock them gently to sleep.  NO!  Chloral hydrate turns my children into ravaging monsters!!!  Before they eventually fall asleep, they first feel dizzy and drunk.  They don’t know where they are or how they got there.  They are mad at me because I allowed the nurse to give them this horrible tasting stuff that made them feel like a giant bag of cow dung.  They twist and arch and smack and kick and scream until they’re raw in the throat and I have to squeeze their limbs tight around them so they can’t do any damage…a two year old body gets very heavy when it’s uncontrollably thrashing and twisting about.  Then finally….FINALLY….their body slowly goes limp… and then they kick and scream and cry some more!!!  But eventually, after about 20-30 minutes of fighting, they cannot fight it any longer and they succumb to their drunkenness and cry themselves to sleep.  *sigh*  I’d be happy if I never have to see chloral hydrate again in my life. 
We don’t have results of the EEG yet, but we have an appt with Dr Murphy again on February 11.  We’re hoping and praying for good results and that they didn’t find any seizure-like activity in her brain.  We can take comfort in the fact that all things are in God’s loving hands, and we know that if it does turn out to be something neurological that God will give us what we need in His time. 
Back to Tyson, he’s been doing fairly well.  A few colds, a bit of pneumonia, a few nosebleeds, a lot of sports-induced bruises;  and the LORD willing, not another Sick Kids appointment until May.  
February is Heart Month.  February 14 is Congenital Heart Defect Awareness Day.  Stay tuned for more information on CHD awareness.  Tyson and I met with our mayor last week to witness the signing of the official declaration of CHD Awareness Day.

Oh, and I just realized that I haven’t even posted the link to the Cardiac Kids promotional video that our family took part in back in August.  To see the video, go to the Cardiac Kids website here.