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!

Blessed Beyond Measure

Tyson sporting his new MedicAlert bracelet
Over the years of being Tyson's Mom, I have sat back a number of times to reflect on how much we are incredibly *blessed.*  It brings tears to my eyes when we think about how blessed we are!  It's never far from our minds how much Tyson has been through in his short life, and how much God has blessed him with strength and perseverance to win the battle he's been fighting his whole life.  We reflect on God's goodness and grace in giving Brian and I what we need to care for this special little man with his special little heart.  And how much He's provided for our other children dealing with the emotional implications of having a medically fragile little brother.  As a family, we are so thankful for everything we've learned in the process, how our faith has grown, how our marriage has been strengthened, how much the love we have as a family has deepened.  Here we have this little boy, whose odds of survival were slim to say the least, and yet here he is!  Three and a half years old!  And doing normal things that other three year olds would be doing.  He plays outside, climbs around on our tree fort, jumps on a trampoline, swims in the pool, rides a bike (or tries to...) kicks a soccer ball around with his brothers, puts on a baseball glove and plays 500-up with his family.  It's just amazing to see God's grace to this little boy He's given us to care for.

For the past two weeks Tyson and our other children have been involved in swimming lessons at the Shelburne Rec Centre.  I was so nervous about how Tyson would behave.  When he has his mind made up about something, he sure makes it known to the whole world!  I was able to speak with the swimming instructors beforehand, to give them a little heads-up about Tyson's condition and also his moods/behaviour.  His swimming instructor Caely was *amazing* with him.  Not only did she get him excited about swimming, she also didn't put up with his attitude when he didn't get his way.  But she was gentle about it.  She was friendly and loving, and you could really tell she loves her job.  Yesterday was the last lesson and I made a special point to commend Caely on how good she was with Tyson, and as I was thanking her I started to get very choked up.  And then later I asked myself, "Why did I get choked up about this?"  I think it's because Tyson is doing things we never imagined he'd be able to do.  I never envisioned that he'd be in swimming lessons like other healthy children his age.  We are so thankful that he was able to experience this along with our other children.

Not only do we feel blessed by God's grace and mercy to us as a family, but we also have been so blessed financially as well.  When one has a child with health concerns, there are so many medical expenses that come along with that, even though Canada has one of the best health care systems in the world.  We have never once seen a bill from any of Tyson's open-heart surgeries, heart catheterizations, echocardiograms, ECGs, EEGs, chest x-rays, lab work, hospital stays...the list goes on and on.  The Ontario Health Insurance Plan covers all these expenses.  And there are always other non-medical costs like hospital parking, meals, lodging, gas expenses... that we pay out of pocket.  We have been blessed by foundations such as the Jennifer Ashleigh Children's Charity who have helped us cover gas and lodging expenses in the past.  Ronald McDonald House has been a home to us during three out of eight of Tyson's lengthy hospital stays.  We're also thankful for the ACSD program and the Ontario Disability Support Program (ODSP) which covers all of Tyson's medication and dental expenses.  Without organizations like these, the extra expenses incurred from having a special needs child would certainly become burdensome! Cardiac Kids even gifted Tyson with a fancy CoaguChek device so we can check his INR levels at home!

We've also been so blessed by our church community when we were in times of financial need.  There have been times when Tyson is hospitalized that Brian has to take some time off work due to the nature of the illness, or because he's had surgeries, procedures, etc...and it is a joyous and humbling experience to find an anonymous donation from in our church mailbox from some of our brothers and sisters in the Lord.  (Thank-you for those gifts, you know who you are!)  Friends will give us gas or food vouchers to cover the costs of traveling and being in the hospital, others will help out by taking our older kids while we stay with Tyson.  We are so so so blessed!

Now all he needs is a tv in his room and he's all set ;)
The whole reason for my blog post today was because we are so thankful for a new bed that Tyson has received as a gift from one of my Mom's clients.  Tyson is so excited about this bed, I just had to do a post about it and post pictures.  This client of my Mom's had a hospital bed that he was no longer using because his wife had passed away, and he had been trying to sell it to a good home.   When he heard about a three year old boy who could benefit from having a bed that could elevate his lungs and help during his frequent pneumonias, it didn't take long for him to offer the bed to Tyson.  Tyson went along with Brian to pick up the bed from his home, so my Mom's client was able to meet the boy who my Mom talks about so much.  Tyson is so happy with his new bed.  He loves the remote control and bringing the bed up and down, up and down.  I'm sure it's a novelty right now, but he gets to choose how high or low he wants to sleep and then we put away the remote for the night.  What better way to help keep his heart and lungs elevated during the winter months when Tyson so often suffers from colds and flus!  It is not something we would have thought to buy ourselves, since these beds are a few thousand dollars! But now that we have it, we are excited about how this bed could really help Tyson when he struggles in the winter.  Again, we are *SO* blessed!



Tyson also got his new MedicAlert bracelet in the mail this week.  It is actually pretty cute on him.  We finally decided on what to inscribe on the underside of the bracelet, which was not an easy feat given the limited amount of spaces allowed on the bracelet and Tyson's multiple health concerns/medications!  







Fontan
Complex CHDs:
Hypoplastic Right 
Heart Syn./asthma
 anticoagulated
In consultation with Tyson's cardiologist, the medical professionals at MedicAlert, and a very friendly paramedic ;) we finally decided on the inscription to put on the bracelet.  You can click on the pic to enlarge it to see the inscription.

In layman's terms:  basically this means that he has complex congenital heart defects (CHDs) involving a Hypoplastic Right ventricle, he's had the Fontan surgery, he has asthma, and he's on a blood thinner. 





All is well right now.  Tyson has recovered nicely from his pneumonia and we will NOT be taking him off his asthma meds anytime soon.  He sees Dr. Murphy again on Monday and I'm sure he will be happy with Tyson's progress.











3 comments:

Anonymous said...

Great post Mel - gets me all choked up :-)
So what does the inscription say??

Alida said...

Oops... that's me... Alida!

Sara said...

Here were my honest thoughts reading your post: Wow! Yay! Oh Wow! Yay! :-)
Sara