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!

A Year of Blessings

Reflecting on this past year, we can be so thankful for Tyson having good health!  He was able to stay healthy enough for Brian and I to go away together in January, then he had a really healthy February and March - with all the cold temperatures he stayed cold-free for two months!  Then after a rough spring with two rounds of oral antibiotics and missing a lot of school, Tyson did need a short stay at Headwaters hospital in May/June because of pneumonia again. Other than a few scary nosebleeds, he stayed really healthy all summer long and our family enjoyed some camping together and then Tyson started school full-time in Grade One. 

He's even gotten over a few colds since cold & flu season started, including this most recent one which actually spread into his lungs and caused quite a lot of coughing and wheezing.  He managed to overcome it though - with the use of regular chest physio & deep breathing exercises and regular ventolin masks; AND with the help of the new oils we've invested in, he was able to stay away from antibiotics altogether! I'm so excited that the oils were able to keep him from getting sicker and prevented the pneumonia from causing a drop in his oxygen levels.  Usually that is what causes Tyson to need hospitalization, because his O2 sats are already lower than normal and his cardiologist wants him on oxygen if they drop below 80.  With this past cold, he never dropped below 83 even while in a deep sleep.  His energy levels did decrease a bit because he wasn't able to be too active without having a coughing spell.  Once I started using the oils though, he stabilized and didn't get any worse!  I'm so thankful for the chest rub made by doTerra.  I know it kept him from needing the antibiotics.  I still can't fully believe it myself, but the proof will be in what happens the next time he gets sick.  Oh boy, I can't even begin to imagine how happy we'll all be if Tyson can remain hospital-free because of these wonderful oils!!!  Is it too much to want him to remain antibiotic-free this winter too?!?  I can't even imagine what that would be like for him! 

Yesterday Tyson was still coughing with activity but he was still able to enjoy skating at the arena.  His endurance wasn't as good, but he still had a very good time!  Then we went to my parents' house for Santa Claus and he was in pretty good spirits again.  Today he only needed physio and ventolin masks twice. I'm so glad he's better and we can get back into a more manageable routine with him.  It was exhausting doing all that physio and oiling and flu bombing BUT it was SOOOO worth it!  It has been helpful that the kids are home from school, because Braden and Merrick usually each took one turn with physio during the day.  I think our biceps are growing with all that physio :)

So our year in review is a really good review!  Once again we see God's hand in Tyson's life and in all our lives.  He has protected Tyson from serious harm and has spared him from needing any further surgeries again this year.  When Tyson was a baby, he had open-heart surgery in 2008, 2009, and 2010.  Now it's been 2011, 2012, 2013, 2014 - FOUR years since his last open heart surgery! Four full years without needing surgery.  God is so good and we're so thankful for the 'break.'

Upcoming things for 2015 is another MRI in April to assess the small pulmonary veins and get another measurement on his heart's ejection fracture.  Then his regular ECHO & cardiologist appointment in May to discuss the MRI's findings and what (if anything) needs to be done.  We pray that Tyson's heart remains stable and doesn't decrease in function, and that the pulmonary vein stenosis does not progress.

I'd like to draw your attention to another blog for which I'm honoured to write.  I love blogging on here because it's a good way to keep track of everything going on in Tyson's life.   Many times I look back at what Tyson endured in the first few years and I think to myself, "Did that really happen?"  I love reading back what I wrote and how God has molded and shaped our family to what He wants us to be.
I'm sure you all know how Cardiac Kids is very near and dear to us, since they provide us with wonderful opportunities for our family to go out and have fun.  Do you remember the video we took part in?  If not, you can view it here at the Cardiac Kids website.   Make sure you visit the site and have a look around, there are a few familiar Kottelenberg faces on there!

Well the blog I've been writing for is also organized by Cardiac Kids, with the intention to raise awareness of CHD, provide information, and help other families in the same situation. I was asked to be a regular contributor to the blog and of course I said 'yes!'

My most recent submission was How To Be A Friend To A Heart Mom

I've also written Tyson's Story  and Being A Heart Family.

So if you have time, check it out!



Wishing you all a wonderful holiday season 
and God's blessings for 2015! 




Slow & Steady Wins the Race?!?

We had to dust Tyson's nebulizer off and start it up again last week.  He's been doing really well since school started in September and has overcome two colds with his puffers, flu bombs, and lots of physio.  But the cold that Tyson has now is deep in his chest and the puffers just weren't cutting it anymore.


It started two weeks ago today as a slight sniffle, then a few days later a little cough.  We were giving him peppermint oil in his aerochamber instead of ventolin, in an effort to try some more natural methods.  Ventolin increases his heart rate and makes him hyper, so if his airways can stay open inhaling pure peppermint oil from doTerra, then we want to use that instead.  It worked for about the first week, but once he started wheezing more and his cough changed to more of a wet lung sound, we knew that the natural methods weren't going to be quite enough because he was likely developing pneumonia again. It's great to use natural methods when we can, but often time is of the essence with Mr. T. 

Once the cough changed from the upper respiratory cold to the 'wet lung' cough (there's a difference in how it sounds...it's hard to explain if you've never had a child with pneumonia....but we've been down this road so many times that we now know the difference in how the cough sounds.)  Brian and I both noticed a change in the sound of his cough last Wednesday night at the dinner table...he coughed....Brian and I looked at each other...and frowned.... Tyson was still acting perfectly normal and he certainly wasn't lacking in energy at all, so we hoped he could make it to school two more days before needing a break to rest over the holidays.  We then started using his ventolin puffer in addition to the peppermint oil.  Maybe that would work better?

When he came home from school on Thursday, he was grumpy and run-down.  His cough was definitely worse so we knew it was time to push the peppermint aside and turn to his tried-and-true ventolin masks.  It's hard to have to get the nebulizer out after so many months of not using it, but we are very thankful that God has given Tyson good health from June - December and not needing ventolin masks or antibiotics since then!

I also went to a workshop about doTerra essential oils on Thursday night where I was able to buy some chest rub.   I started using the chest rub as soon as I got home on Thursday night and from the sounds of his cough we decided to leave Tyson home from school on Friday so that he could get the attention that he needed.  Even though after dinner he was again acting fine and had good energy he just can't get in enough ventolin masks or chest physio when he's at school all day.  Also, in order for the oils to do their job they have to be used several times a day and not just morning and night.  If we want results, we had to leave Tyson home and do the protocol with him several times. 

The chest rub is made with doTerra's essential oils mixed with coconut oil.  I'm not sure of the exact recipe but I know there are some key ingredients in there that promote a healthy respiratory system and open up airways like Cardamom, Rosemary, Peppermint and doTerra's respiratory blend called "Breathe."   I also use what we call a 'flu bomb' which contains oils that fight infections like Melaleuca, Lemon, Oregano, and doTerra's protective blend called 'On Guard' which we rub on Tyson's feet several times a day.   We also use this with our other kids at the onset of an illness and it usually heals them very quickly.  It doesn't really give the virus a chance to run its course; it kinda just attacks the bug before it can even get started on anything!

We've been using 'Breathe' and 'On Guard' in Tyson's oil diffuser every night since last year sometime and it's only recently (November) that we invested in some more of doTerra's essential oils in an effort to prevent Tyson from being on antibiotics all winter long. 

This is our new 'medicine cabinet.'


So we kept him home from school on Friday, and I used the chest rub on Tyson's chest & back every hour for all of Friday and Saturday, in addition to his ventolin masks and chest physio every 4 hours.  I also made a Dr appointment for him (after talking to my smart, think-ahead mother - thanks Mom!) to see if we should have a round of antibiotics on 'stand-by' just in case the oils don't work for him.  I really, really want to give the oils a chance to fight this infection, but I also didn't want to end up in emerg with him on the weekend!  The Dr didn't specifically hear pneumonia when he listened to his lungs but he said, "I've been wrong about Tyson before and you've been right.  So I believe you when you say you think he has pneumonia." Hehehe.... He said that with a healthy child he likely wouldn't prescribe the antibiotics but with Tyson's history of pneumonia, he didn't want to risk it so he wrote a script up.  I talked to him about the idea of not filling it right away and waiting to see if the oils would heal him.  He seemed skeptical that it would work, but we are going to hang in there and keep up with it until we know for sure it's NOT working.

So we have the antibiotics if needed but so far Tyson is remaining STABLE.  He is definitely not getting worse, that's for sure, but is he getting better? - that's the question. It's hard to say.  There's still a lot of junk in his lungs which he is trying to expel with lots of chest physio and getting rid of anything that he coughs up, but his O2 sats are stable at 84-90. 

This weekend has been busy with all the oil rubbing, flu bombing, chest physio, and ventolin masks....but so far he's not sick enough to need the antibiotics.  I have heard of so many success stories from people whose kids have struggled with pneumonia and now that they use the oils, they no longer need antibiotics anymore.  I want this for Tyson so badly!  But I also know that with him, there is a very fine line between healthy and sick.  One day he seems ok and the next day he needs to be hospitalized.  So we are watching him very closely and doing what we can to get him healthy.   If his sats start to drop or he spikes a fever or starts to lose his energy, then he *will* need the antibiotics and we will give it to him.  We figure that if the oils work, and they can prevent him from needing antibiotics even once or twice every winter, then it is so worth it!

And I can tell you another thing: if these oils work and can heal Tyson of pneumonia, I will be shouting about doTerra from the rooftops, telling it to anyone and everyone who will listen to me!!!  If this works, we will be SO happy!  We recognize that it is all in God's hands and we are praying that the oils will produce good results for Tyson.




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!