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!

Pneumonia Again




Tyson had a very fast and furious pneumonia hit him this week. It came on very quickly with a slight cough on Wednesday, by Thursday night he had a fever and by Saturday afternoon we were sitting in emerg waiting for x-rays. 

The pneumonia could be seen on x-ray and heard by stethoscope, and he has a very wet cough indicating his lungs are full of junk.  Thankfully,  because his oxygen saturations were still fine (90-91 in emerg!!)  they put him on oral antibiotics and sent us home. (YAY!)

Can you please join us in prayer that the oral antibiotics quickly clear it up and we can get him healthy again.  He is not sleeping very well at nights and he is gruuuuumpy.  This is his third time on antibiotics this season.  The last time he was put on oral antibiotics it took a little longer to fully clear and this is concerning because if these oral drugs don’t work, he would need IV antibiotics at the hospital.  We love being home (it’s been over a year since his last hospital stay!) so we’d like to stay here if possible.

We missed out on the Labatt Family Heart Centre Conference this year because of Tyson's illness.  I enjoy this conference so much because it's an opportunity for us to learn more about new cardiac research developments, coping mechanisms for parents/siblings with cardiac kids, as well as support and encouragement from the cardiac community of Sick Kids; all while my kids are off having fun at the crafts, games, and activities planned for them by the nurses and staff of Sick Kids' Heart Centre. This year the conference took place at the Sick Kids' Research Tower and I was so excited to get to finally see this building :(   Maybe next year?

To make matters even worse, remember that bruise that Tyson has on his forehead?  (It's about three weeks old now but it's still obvious enough that they asked about it at the hospital.)  The bruise is finally fading...but today Tyson tripped and fell onto the corner of our piano bench with his face, smacking his jaw hard.  Scraped and bruised on his face again!  I didn't think it would be that important to ice it because hey, at least it's not on his head.  Well, in hindsight, we should have iced it.  It is slightly swollen and it's going to leave a bruise about as big as the one that's finally fading on his forehead.  We're thankful that the point of impact was slightly above his jaw bone; I was worried about damage to his jaw - but he says the bone doesn't hurt and he is eating fine.  Now I'm extra hopeful we don't have to bring him back to the hospital this week - they won't like seeing a new bruise on his face since last time. 

Will you please pray for Tyson, that the antibiotics will work their magic so that he can regain his strength and continue to recuperate at home rather than the hospital?
Thanks!
Brian and Melissa   

Happy April!

We made it through March!  We made it through March!  We made it through March!

I know, I know, it's been a long winter and this year's April will be more like our typical March weather.  But I am still thankful that Tyson remained healthy through all of March, with the exception of a 24 hour stomach bug.

But here's the best news ever:  Tyson's not coughing.  At all.  He hasn't been using ventolin since late February when he developed a small cold and we quit the ventolin the first week of March.  Since then he's been back on his aerochamber & puffers and he hasn't touched his nebulizer machine since.  His nebulizer is actually starting to collect dust!

He is on a fair amount of supplements and vitamins in an attempt to keep him from the hospital this year, and so far they are working!  Multi-vitamins, plus extra C, extra calcium and D, a plant sterol-based immune system builder, pro-biotics, and a new product we're trying this spring from doTerra called 'On Guard.' This is an essential oil blend containing wild orange peel, clove bud, eucalyptus, cinnamon, and rosemary which diffuses into the air of his bedroom while he's sleeping.  We also purchased another doTerra product called 'Breathe,' which is for when his asthma flares up, but thankfully we haven't even had to use it yet.  It will be interesting to see if his asthma acts up at all this year.  So far, since we've been using the essential oils, he has been relatively healthy from a respiratory point of view.

Tyson remains on his asthma medications that control his symptoms and reduce inflammation in the airways.  Flovent is the corticosteroid that he inhales and Singulair is the preventative pill that he takes every night with dinner.  Of course, he also remains on coumadin for his heart.

Praying that Tyson remains healthy this spring.  We have a lot of exciting events happening in April and May and it would be so awesome if we could enjoy them all. April brings the celebration of Christ's sacrifice on the cross at Easter (last year we were in the hospital on Easter weekend) and the Labatt Family Heart Center Conference on the 26th. In May our school is performing a musical on stage, and on the 31st our family will be participating in the Superheroes Bowl for Cardiac Kids.

Click on the Superheros Bowl link if you'd like to sponsor Tyson and his family for this event. Click on this link to see what's new with the Cardiac Kids - and to see some very familiar faces...see if you can find three of my little blessings on the site!)

That's all for now.  Please keep praying we enjoy a healthy spring!  We have been hospital-free for almost a year now, and we kinda like being at home :) 

Sometimes coumadin makes me laugh and sometimes coumadin makes me cry. 

This was one of those laugh-cry-laugh moments ;)