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!

Huge Delivery from Make A Wish Foundation


 WE'RE   GOING   TO   DISNEY   WORLD!!!!

We received a big delivery from the Make A Wish Foundation this week.  The kids (and I) have been waiting for this package for months, knowing that it contains all the info we need for Tyson's wish trip to Walt Disney World to meet Spiderman and Mickey Mouse. 


We are blessed to be able to spend the week at Give Kids the World Resort, a resort only for wish kids and their families.  This is an all-inclusive resort, so we won't be paying for a thing!  
AND they've given us a cheque in the sum of a very large amount of money to use as spending money and souvenirs!    
AND they are picking us up in a LIMOUSINE!

The limo will be picking us up at our doorstep at 2:30 in the morning!!!  That is soooo early, I don't think we're going to sleep the night before!  The reason we're being picked up so early is because our flight leaves Toronto at 6:15am (check in at least 2-3 hours early) and we arrive in Orlando at 9:15am.  So the advantage to this is that we'll have the entire day to get settled into our resort before our fun begins.  Brian or I will attend an orientation session the day we arrive, so that we know where we have to catch the shuttle which takes us to and from the Disney Parks each day, and pick up our tickets for the week.

There are so many fun things to do at Give Kids the World! GKTW is a 70 acre park resort with a big pool, a splash pad, restaurants, an ice cream parlour (so you can have ice cream for breakfast - can't wait!) mini golf, pony rides....and the Disney characters visit GKTW often for autographs and pictures. 
Our family will also receive tickets to the 4 Disney Parks, Sea World, and Universal Studios.  Tyson is really looking forward to meeting Spiderman at Universal, and we will also be booking a photo op with Spiderman at the GKTW resort on Friday morning. 


Take a peek at this link to see where we will spend our week :)
http://www.gktw.org/about/families.php

 Here are some pics of the day we opened the huge gift box from Make A Wish.

Tyson doing the honours of opening the box first
The kids all digging in...
Tyson received his very own camera!
These are some of the gifts Tyson received
Addisyn got spoiled too
Addisyn in her new Disney hat
Kenya with her Little Mermaid doll.  I think she likes it!
Merrick posing with his gifts.  I think he's excited!
Kenya's gifts
Braden's gifts

Cold & Flus & A Call to 9-1-1

Considering the up and down weather we've been having, and the amount of colds and flus that have been circulating, we all have been 'relatively' well this winter.  Tyson is doing amazing!

He managed to get over a pretty bad respiratory virus which he caught over the Christmas holidays.  He was on the ventolin mask 4 times a day, and struggling through the night, and he was *extremely* irritable....but his saturations remained above 83 at all times, so we decided to wait it out.  Once the New Year hit, within a matter of a couple of days he pulled through it!  He woke up one morning with a smile on his face and a spring in his step again.  We are SO thankful we did not have to spend the first few days of the New Year in the hospital.  We are SO thankful that God gave Tyson's little body the strength to fight it out and kick that nasty cough.  He's back off the frequent ventolin masks again now, but remains on the pulmicort (long-lasting corticosteroid) mask twice daily still. 

We've also had the gastro bug pass through our house twice already. I am SO THANKFUL for the CoaguChek machine that monitors Tyson's INR level. Having a young boy on blood thinners sure makes life *very* interesting.  Last year, if Tyson caught the gastro bug, he'd have to go for blood work every other day or so until his INR level stabilized again.  The same goes for having a bad cold.  Viruses & bacteria can really make the INR level go out of whack, and the antibiotics especially make it go extremely high, and so does Advil we've discovered.  We have to keep his level between 2.0 - 3.0.  If he catches a stomach bug or a cold, it can often cause his INR level to skyrocket, which makes his blood extremely "thin", meaning he is at great risk of uncontrolled bleeding. 

We saw first hand yesterday how dangerous an elevated INR level can be.  I had noticed a few larger-than-normal bruises on Tyson's chest, legs, and arms this past weekend, but I was not too concerned about it because
a)  he bruises all the time, he's a boy on blood thinners! and
b) we've been checking his INR levels at home with his CoaguChek very frequently (because of the colds/flus) and he's been fine.

Normally, we check his INR every 2-3 weeks, but with all the cold/flus/gastro bugs going around our house, we've been checking it weekly to make sure Tyson is still ok.  His last 2 INRs were within therapeutic range, and now that he's healthy again we weren't "planning" on checking again for a few weeks.

Well, yesterday morning he had a nosebleed so heavy and so long that I could not control it.  There was blood everywhere, my bathroom was covered.  I ended up moving him to the kitchen so he could at least watch some tv while we waited this out....but after 45-50ish minutes with absolutely no end in sight, with shaking hands I called 9-1-1.

An ambulance was sent out to our house and, of course, the bleeding stopped within minutes of the paramedics arriving.  I am so thankful for that!  Once we got cleaned up again, we used the CoaguChek to check his INR, which was 4.5.  It's supposed to stay between 2.0  and 3.0.  That would explain why the bleeding didn't want to stop. 

He saw Dr Murphy that afternoon anyway so Dr checked him out and things are just fine with him.  Probably just dry winter air that started the nosebleed and an elevated INR that didn't allow it to stop.  Thank God it did eventually stop!  And thank God that we have the *luxury* of checking his INR level at home!

We obviously held his coumadin dose for last night, and today when I re-checked, his INR was back down to 2.5.  If we didn't have the CoaguChek machine, he would have had to go to the lab for bloodwork yesterday, and probably again either today or tomorrow to make sure things are back on target. I am so so so thankful!  And Tyson is such a trooper about the finger prick.  When I told him he had to have his INR checked again today, he just hopped on my lap with no big fuss.  Blood work would have been a totally different story!

We are so thankful for Tyson's health, for the CoaguChek machine, and for all those continuing to hold Tyson up in prayer.  We know God is working miracles in our heart warrior, we see it happening each and every day.  Continue to pray for a strong and healthy winter, free of serious respiratory illnesses, and especially free of hospital stays.  Please also pray for stable lung pressures and good cardiac output so we can stay off that transplant list for a LONG, LONG time!

I'm sure you can expect another update again soon.  We are 4 1/2 weeks away from the most anticipated trip of our lifetimes!  Tyson's Make A Wish trip to meet Spiderman and Mickey Mouse at Walt Disney World, Florida!   WE ARE SO EXCITED!  Currently we are awaiting Canada Post's package delivery from Make A Wish with all the details and an itinerary of our entire week :)  More details to follow....