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!

Day Eight Post-Fontan

"Surely he has done great things!
Do not be afraid, land of Judah;
be glad and rejoice.

Surely the LORD has done great things!
Do not be afraid, you wild animals,
for the pastures in the wilderness are becoming green.
The trees are bearing their fruit;
the fig tree and the vine yield their riches.

Be glad, people of Zion,
rejoice in the LORD your God,
for he has given you the autumn rains
because he is faithful.

He sends you abundant showers,
both autumn and spring rains, as before.
The threshing floors will be filled with grain;
the vats will overflow with new wine and oil.
I will repay you for the years the locusts have eaten—
the great locust and the young locust,
the other locusts and the locust swarm _
my great army that I sent among you.

You will have plenty to eat, until you are full,
and you will praise the name of the LORD your God,
who has worked wonders for you;
never again will my people be shamed.
Then you will know that I am in Israel,
that I am the LORD your God,
and that there is no other;
never again will my people be shamed."
Joel 2: 21-27

Two JP drains out, one more to go! I'd much rather have Brian be the one by Tyson's side when they pull out the chest tube, but since he wasn't here today, I had to stand at the bedside, stroking Ty's hand, wiping the tears, and kissing the forehead of an absolutely frantic, screaming toddler. I held his one hand (more like pinned his arm down,) one nurse held his other hand, anothe rnurse held his legs, and another nurse did the work. I warned them that they would need ear plugs for this procedure...We did give him morphine about an hour before the procedure, but it's only a drop in the bucket compared to the pain he experienced during that. Not an easy experience for me, but Tyson has been happier, and more active with one less tube. He played hockey in the hallway for a good part of the day. If all goes well, and the drainage volume continues to decrease, the last JP will be pulled out tomorrow or the next day. Then it's free sailing :)

Brian's parents came for another visit today. They enjoyed seeing Tyson getting back to normal, kicking a soccer ball around the playroom and riding through the halls on the riding toys. It's always so nice when they come, and nice that they are able to come so often too! Thankfully, Tyson was in a much happier mood than the last time they came.






We also had a surprise visit today that just totally made my day! Denver Komdeur, Tyson's fellow CanRef heart buddy, and his parents Mark and Susan came for a visit. Denver had his annual echo at Sick Kids this afternoon so they dropped in for a visit. I was so surprised and excited to see them :) Denver came bearing gifts, which also made Tyson's day. A Toronto Maple Leafs mini-stick and two balls! Denver was so good with Tyson too, keeping him busy while his Mom and I caught up with one another. They played hockey in the hallway, and even compared "zippers!" It was so refreshing to see them again :)



Denver and Tyson - heart buddies :)



Conrad and Tyson - they often meet together in the 4D playroom.
This was Tyson's attempt at saying "cheese." :)

Hopefully by tomorrow we'll have a good idea of when we'll be going home! Can you believe that? :D

Mel:)

7 comments:

Mel said...

Awesome! Awesome! Awesome! Our Lord is so good!!! Can't wait for you both to come home! Love you!!
Mel

Anonymous said...

Awesome News!! Glad everything is going so well!! Hope that you will be home again soon.

Gerald, Michelle & Family

Tanya said...

Soooo awesome! Glad to hear such great news again. And SO happy that you were able to have great visitors today. Amazing to be able to connect with another heart patient who is so much older and from a family that has so much of the same background as you.
Can't wait to see you back home soon! Be prepared for lots of snow :)
Continuing to praise God with you and for you and praying for continued recovery! Also praying you have a good night tonight .... sleep well, both of you! T

Anonymous said...

Great news! We're so thrilled that things are going well - very cool that the Komdeurs could come and visit too :-)
Hope to see you guys over the holidays - it would be such a blessing to spend it all together!
Garth and Alida, Sara, Noah, Julia, Nadia

Anonymous said...

Wow!! Truly amazing news!!
Maybe we won't be able to visit you Friday evening after all cause you'll be on your way home!!
Guess we'll just have to visit you at home.. :)
L&D

Anonymous said...

Glad to hear how everything is coming along:) Tyson looks so good in the pictures!
Love Rob and Anne

Anonymous said...

When I have a moment, I like to peak at your blog and see how Tyson is doing.... Today , I look at the first picture and think, wow, does that ever look like Denver... duh ... How great that they could visit! Tyson is looking great! Praying that he will continue to recover and soon can go home!
Marie and Andrew