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!

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.




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