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 nine 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!

March Update

I apologize for being so seriously behind in my blogging!  I assume that you would all assume that Tyson made it safely home from the hospital in February.  Not only did he make it home, we also made it to Florida for our holiday too!  Tyson got home on Saturday afternoon, spent Sunday and Monday recuperating at home.  By Monday I knew he was 100% back to good health so off to school he went on Tuesday.  Even though it was only for one day because we left for Florida on Wednesday, it was good for him to get out of the house and out of his sister's face for the day.

Our trip to Florida was very nice.  Even though the weather wasn't quite as warm as we'd hoped, you just never know what to expect for Florida weather in February and it certainly was much nicer than the -35 degrees experienced back at home in Canada!
We spent a couple of days reminiscing Tyson’s wish trip by visiting Give Kids the World as a welcome back family.  It sure was good to see our old friend Mickey Mouse again!  We sure missed him and it was good to experience again the joy he brought to Tyson's face, and this time Addisyn really enjoyed him too.

2013
2015
2013
2015
 I love looking at these pictures and comparing them, seeing how much our family has grown.  It's especially nice to see that Tyson is actually slowly growing too!  When I look at him compared to the other kids in his class, they are continuing to grow taller and taller and Tyson is growing much slower than them.  But looking at these pictures together tells me that he IS growing, so that is good.  And he finally hit 40 pounds last month, so he is officially allowed to be sitting in a booster seat in the van. 

The drive down to Florida actually wasn’t as bad as I thought it would be!!!!  I pictured grumpy, whining children the whole way down with lots of fighting and bickering coming from the back seat, but they didn't gripe and complain at all!  We gave Tyson his own seat in the middle of the van, rather than our original plan of putting the three little ones in the back bench seat.  I think this was the best decision for everybody; that way Tyson had his own space and no one could be blamed for bothering him or keeping him awake when he got sleepy, etc.  The kids were as good as gold on the way there and on the way back and as much as I was so worried about how the drive would go I can say we’d definitely do it again.  And it will only get easier as the kids get older :)

We left Florida again on Thursday evening to time the drive so that we could make an overnight stop in Ohio to meet a special little almost-5-year old boy and his beautiful family.  Jacob Gaume was born with Hypoplastic Right Heart Syndrome, Tricuspid Atresia, Transposition of the Great Arteries, and ASD & VSD...
...JUST LIKE TYSON!

Not only that, but he also struggles with pulmonary vein stenosis in his left pulmonary veins...
...JUST LIKE TYSON!  

His Mom Jennifer and I met on an online support group on Facebook four years ago when Jacob was just a baby and Tyson was just about going in for his Fontan surgery. Because our sons’ hearts were so similar we made an instant connection.  We started by private messaging each other and sharing our son’s stories.  We continued our friendship over the phone; crying with each other over life’s challenges and fears, rejoicing with each other over milestones met, pouring our hearts out to each other, sharing our faith with each other and supporting each other the way only a fellow Heart Mom can.  It’s been amazing to develop such a strong connection with Jenn over the years, and when she found out we were driving to Florida this year, she said to me“You HAVE to stay with us!” Jenn and Ken, Maddie, Drew, Jacob, and Ryan:  THANK-YOU for opening your home to us and making us feel so loved and welcome. It is truly a blessing to have met you all, and now we can call you our 'real-life friends.' 


Me & Tyson and Jennifer & Jacob

Now that winter is almost over, we are gearing up and praying for a healthy spring.  Afterall, Tyson already had his hospital stay for 2015 already, right?  As far as colds/pneumonia goes, he seems to have one 'big one' every winter, so hopefully February was his big one. We’re praying that he's already filled his quota for the year and he can be healthy for the rest of the year :)  He’s been SO healthy since his last hospital stay! (Hmmm where have I heard these words before…they seem to be a favorite phrase on this blog!!)

As you know we’ve been using essential oils in our family for a while now.  This past winter we started using even more of these oils, putting them to work not only for Tyson but for the rest of the family too.  The oils we use are 100% Certified Pure Therapeutic Grade quality oils from doTerra.  I love having a slew of things right at my finger tips to help us through the minor infections and boost our immune systems at the same time.  We're all happy with the results that we've been seeing in our family.   (And I sleep so well at night now!) It really is amazing.

Other than that one respiratory bug that hit Tyson in February, our other children have had the healthiest winter they’ve ever had!  No bad viral infections, no bad colds, no stomach flu, nothing serious that just dragged on and on.  It's amazing when you 'nip the bug in the bud' quickly enough and start taking oils at the first sign of infection, you can reduce a head cold to 24 hours maximum with the use of essential oils.  It’s amazing! We realize that Tyson is a very special case and sometimes it takes longer for natural remedies to work for him.  The toughest part is because of his lower oxygen levels, we don't always have a lot of time to wait for them to work.   I feel like I am more educated about the oils now than I was even in February when he was in the hospital and feel like now that I know exactly how to treat pneumonia, I will treat it differently the next time.   But at the same time,  Tyson did get over the worst part of the infection at home, and we were able to keep him at home a lot longer than other times.   So I have to stop beating myself up about it and thinking about what I could have done differently to prevent a hospital stay.  I did what I could and it turned what could have been a week long stay into only a 2-day stay.  I do know what I'd do differently next time though. 

We continue on with Tyson's lung physio and deep breathing exercises and he is doing very well with the vitamins and supplements that we're giving him to boost his immune system.  He is happy and enjoying school (sort of...we have to draaaaaag him out of bed in the morning but once he gets there he seems to have a good time.) He had a great second term report card; his teacher says he is full of life! And we are proud of how much he is reading and learning. 

March Break is here and although his brothers and sisters are busy with sleep-overs and parties, Tyson is laying low this week.  He is super duper healthy and we don't want to mess with that.  His body thrives on proper sleep and keeping him in routine this week will help keep him healthy.  March and April are really tough months on him so please pray with us that we can avoid the hospital.  That seems to be my ultimate goal as a Mom these days:  keeping Tyson out of the hospital and keeping the home life stable. Ultimately, it is not in our hands, but I feel blessed to be able to use the things that God has created from the beginning of the world to keep my family healthy. 


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