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!

2015 in Review

I am MORE than just a LITTLE embarrassed about how LONG it's been since our last update.  I keep meaning to give an update, even just a short one, but honestly we've just been so busy living life to the fullest. 

From now on though if you don't hear from us, take that as a very good sign!  I usually post more often if Tyson is unwell.  Now that he seems to be flying through life, there are definitely so many things to rejoice over but so very little time to sit down and blog.

Here's a re-cap of Tyson's summer:
















No family holiday would be complete without a trip to the ER.  Tyson fell off his bike and had quite a gash on his knee.  (Can you imagine what that looked like being on coumadin?!?)  Let me tell you something: Cambridge Hospital has the SLOWEST ER ever.....several hours later Tyson finally got his stitches.  Not home till after midnight...poor kid was exhausted!
Kamryn, Tyson, and Reid.  Heart Heroes.
We enjoyed a week away at a cottage in Quebec, compliments of one of the sponsors of Cardiac Kids.  Here we had the privilege to vacation with a fellow heart family, the Arbeaus, and we also met another heart family, the Gobeils.  We all had an absolute blast!






Enjoying some down time watching a movie
 In August we traveled to Burlington a couple of times to watch history in the making.  Steve Gaul, drummer and Heart Dad, broke the world record for solo drumming by drumming for 134 consecutive hours, raising over $40,000 for Cardiac Kids, a charity very dear to us.


This is Tyson with Steve shortly after breaking the Guinness world record.



Every day Steve drummed for a different cardiac kid.  On Tuesday Steve drummed for Tyson.  This plaque was displayed as inspiration for Steve to keep drumming, and to help raise awareness of CHD to those witnessing the event.  This plaque is now hanging in Tyson's bedroom above his bed.  Love it!  It's such a great representation of his journey with CHD.

Tyson after the Drumathon.  Looking a little sleepy....lol
Tyson and Meghan always hitting it off
Every year we participate in Miracle Treat Day to raise money for Sick Kids Foundation.  Of course, we don't really need an excuse to eat blizzards, but hey it's WIN WIN!  The manager came up to us and asked if next year Tyson would like to go behind the counter and make blizzards for customers.  


Tyson had the ultrasound on his kidney in June and then a follow-up appointment with the nephrologist at Sick Kids in September.  We are thankful that this cyst on Tyson's kidney is indeed a 'simple cyst' which is most likely harmless.  The Dr would like to do a few more ultrasounds in the next year or so to keep an eye on if the cyst changes in shape or size during that time, so we have added another department to the list of departments that Tyson visits at Sick Kids.

Tyson had another ultrasound on his kidney done in November on the same day as his cardiologist appointment. It was a very busy day!

9:00 Bone Density Scan
10:00 Thrombosis
11:30 Kidney ultrasound
1:20 ECG
2:00 ECHO
3:00 Cardiologist

The results from the bone density scan are unchanged since last year so that is good.  The concerns we had at the thrombosis clinic at this time last year with his nose bleeds have subsided as we have found natural solutions for prevention.
His heart is unchanged from last time and there is no further deterioration.  We are thankful to be enjoying many months of wonderful health for Tyson!

As you may or may not know, our family has started using essential oils for all our health concerns, and Tyson is no exception.  In fact, the whole reason we decided to give EOs a try was BECAUSE of Tyson.
At this time last year, Tyson was still on his nebulizer (ventoling mask) every four hours, even round the clock at times.  He was on 4 different medications for his asthma alone.  Since we started using EOs in his diffuser and applying them topically on his chest & back every day, he has been able to slowly be weaned from his meds.  He had a short hospital stay and a round of IV antibiotics because of pneumonia in February but since then.......

HE HAS NOT BEEN SICK AT ALL!

Since March 2015, once he got well from his last pneumonia, we weaned him OFF his nebulizer machine.  Then at the end of the month, we took him OFF his Flovent puffer (that's the orange cortic-steroid.)
Since he is normally really healthy over the summer months,  we also took him OFF his Singulair medication (the oral med that prevents inflammation in his airways.  We did so purposely 6 weeks before seeing his respirologist so that the med would be completely out of his body and see what the Dr would say.  Good news!  He sounds great without the meds!

We were warned by both his pediatrician and respirologist to keep an open mind that if Tyson did begin coughing or wheezing again once school starts again, we'd have to give him puffers and the Singulair again.

Tyson's summer was filled with amazing health and great opportunities for us as a family to enjoy our time together.  

Since Tyson started school in September, he has been quite healthy.  I don't think he's missed any days due to illness (none that I can recall at this time) and the minute he starts feeling 'off' or under the weather, we begin the routine boosting his immune system and killing the bug with our essential oils.  We are so blessed to have found these oils!!!


When we first started using EOs last year, after we had bought our first kit, Tyson got really sick with pneumonia.  We took him to the Dr, the Dr confirmed pneumonia, he wrote a prescription, we filled it out and then let the antibiotics sit in the kitchen cupboard.  We got to work with the oils, were diligent in giving him the rest that his body needed, and at one time I had said to Brian, "If these oils work....and they can help my complicated heart boy get over pneumonia...then I will proclaim essential oils from the rooftops!"

Well, it worked!  Tyson got over it and did not need to use his antibiotics!  It seemed like a miracle, and indeed it was by the grace of God that he was able to return to good health with the use of these oils.  His saturations did drop a little but they stayed stable enough that he didn't need oxygen, even despite the confirmed case of pneumonia by his Dr.  Pretty amazing, huh?

Now, I have found a new passion.  I've always had a passion for my fellow heart families.  Now I have found a passion for helping others find natural solutions to achieve better health and wellness.  If you are interested in hearing more about essential oils and what they can do for you, feel free to send me an email. (Address on top right hand side of blog.)

We have oils for health and wellness, oils for weight management, mood management; we also have whole-food vitamins and supplements that are also infused with essential oils, hair care products, and skin care products.  If you have any questions at all, feel free to email me and I'd be happy to find an essential oil or two to suit your family's needs.  I even give out free essential oil gift packages with a free oil sample if you're wanting to learn more!


Our family was also blessed with a free stay at Great Wolf Lodge in November from Starlight Children's Foundation.  Do you see these two cuties in the picture above?  They are the same age and have the same heart condition....and they were both hospitalized at Sick Kids at the same time way back when they had their Fontan surgeries!
It was such a blessing to be reunited with Lucca and his family after almost five years!  Thank-you Starlight for allowing these boys to feel 'normal' at the water park, a place where people usually stare at them.  I'm also so thankful for the chance to catch up with Lucca's Mom and chat with her about 'heart stuff.'

It is almost Christmas time and there is not a flake of snow on the ground.  Normally, the constant rise and fall of temperatures send most Heart Moms into a panic, because of what it does to their little ones' airways....but THIS year I am not scared.

THIS year, this is me:























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