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!

CHD Awareness

Today Brian and I took Tyson for our annual meeting with Shelburne's Mayor Ed Crewson for the signing of the official proclamation of February 14, 2013 as Congenital Heart Defect Awareness Day.  We're so grateful to Ed Crewson and the town council's willingness to help us in spreading awareness.

Signing of the official proclamation
We are getting ever-so-close to our trip to Florida!  We hit a very small glitch this week, as I didn't realize that Tyson's cardiologist would want Tyson to have oxygen readily available to him on the plane ride there.  When going through the Make A Wish process, you need a physician referral and we used Tyson's family doctor since he's local.  There is a lot of paperwork involved in the process, so we thought a local doctor would be easiest.

Then, just 10 days before the trip, I thought I should definitely be calling Tyson's cardiologist to inform him that we would be out of the country...just to double-check that everything is ok.  And he suggested we let the airline know that Tyson will need to have oxygen readily available during the flight, especially during ascending and descending.  The thought for O2 never even crossed my mind, since we flew with Tyson when he was 11 months old.  The cardiologist said that is because back then, his heart was a 'typical post-Glenn, pre-Fontan heart' whereas now, he's not a 'typical Fontan.'  This is because his blood is shunting through his fenestration in the opposite direction than it should be, so he is at a greater risk for decreased oxygen levels during the higher altitudes on the plane.   Ooops...that's what I get for doing the referral process with his local dr instead of through Sick Kids.  

Thankfully, we were able to get the appropriate paperwork filled out for this, and Tyson's cardiac clinic nurse at Sick Kids was happy and willing to expedite the process for us.  *Phew*!  Everything is now in place, and as a result we were able to do seat selection for free and the kids have all been registered in the Air Transat Kids Club for free too (because Tyson's oxygen needs to be turned on and ready to go, they have to put him in a specific seat, so we are all able to have seat selection for free too.) There are some extra perks for the kids being in the Kids Club, so that is cool.

I can't believe our big trip is next week already!  We are SO pumped and ready to go! 


1 comment:

Anonymous said...

Woohoo! We're praying that you all stay healthy this week!

And the mayor's bowtie is VERY tacky... :)

Erin