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 17 Post-Norwood - Sunday, December 21, 2008

"Praise be to the LORD,
for he has heard my cry for mercy.
The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.
The LORD is the strength of his people,
a fortress of salvation for his anointed one."
Psalm 28: 6-8

We seem to be taking all our texts these days from the book of Psalms. In the Bible, God's people often used psalms to praise God, cry out to God for help in time of trouble or despair, and to thank God. We have chosen these psalms because they are full of expressions of praise to our Almighty God for the wonders He has done! We give thanks to Him every day for guiding us through (more like carrying us through) these difficult times.

In the Bible God's people also sang the psalms when they were together to worship God. Today we were able to sing and worship with the Toronto Canadian Reformed Church once again and celebrate the Lord's Supper with them too. What a privilege and blessing to be able to experience the communion of saints amongst a people who don't really even know us, but are thinking of us and, most importantly, praying for Tyson! Rev. DenHollander has such a gift in his preaching and speaking and we have felt warmly welcomed and loved among the congregation there. Although our circumstances have allowed us to attend only in the mornings, there were many times that people's doors were opened up to us and we definitely felt at home while we were there. The Lord willing, we will be able to worship with our home congregation in Orangeville this coming Sunday. We are really missing our fellow brothers and sisters in Christ from Orangeville. It has been 3 weeks since Brian has been in Orangeville church and 5 weeks since I have been in Orangeville church, so we certainly miss everyone!

Tyson has been doing a lot better at eating. He was finally put on anti-reflux medication yesterday afternoon and by early this morning he began drinking the full 2 oz bottles! He still spits up a little, still a little more than than the average baby, but he is showing good interest in the bottle! This is partly because we have given him more time in between feedings, and also due to the anti-reflux medication he has been on. We are so thankful that he is progressing in this way because now there is a chance that he can go home "sans Ng." :P

I was beginning to finally accept the fact yesterday that he most likely would be going home with a feeding tube and so we made an appointment for training on Ng tube re-insertion. Because I have been overwhelmed with all the responsibilities that I have to take on already (running the feeding tube, cleaning the tube, preparing medications, Enox needle injections, etc.) I asked Brian if he would be willing to learn how to re-insert the tube should it ever come out. The chances of it getting accidentally pulled out are slim so the chances of having to re-insert it are slim, but we needed to have one of us learn how to do it so that the doctors can be comfortable sending Tyson home this week. It is not an emergency situation that the tube get re-inserted immediately after being pulled out, since Tyson can take food orally and he wouldn't dehydrate quickly. But it would save us a trip to the ER if Brian or I knew how to put it back in. So I am thankful that Brian was willing to take on this responsibility and he seemed to be a pro at it so whew! One less thing for me to worry about! Brian was taught how to take the tube out this afternoon and you can see him hard at work in this picture!
So..... if Tyson continues to eat well and he is consistent in taking the entire bottle every time he eats, we can most likely go home with no tube in. I heard the doctors muttering on rounds one morning something about "possibly Tuesday or Wednesday." So we don't have a confirmed date yet but it looks like, as long as things don't take a turn in the wrong direction, we may be home in time for Christmas afterall! I will most likely have a definitive date by morning, as long as the doctors are happy with Tyson's progress. We personally are ECSTATIC with his progress! Brian and I were just looking back at the pictures of him immediately following his surgery and were blown away with how far he has come! It is sometimes hard to step back and see his progress when we are faced with challenges every day but we have so may reasons to be thankful and praise God for His goodness and grace in our lives!

Oh yes, Tyson's PICC line was removed on Friday afternoon. We had to go in to IGT (Image Guided Therapy) to have it removed. They froze his arm with a local anesthetic first and then had to dig out a small cuff that sits just below the surface of the skin. He has quite a hole in is arm now but baby's heal quickly and this isn't the only scar he will be left with! The PICC being removed is a big step in his recovery too because it means that Tyson is off all medications through IV, and it is also means that the doctors are confident that Tyson won't be needing any more bloodwork done to check his hemoglobin levels, gas levels, white blood cells, etc. So that is cool! Now the only thing he has invading his body is the Ng tube, (which hopefully can come out soon?)

We had a great weekend with our kids! Brian braved the storm on Friday afternoon and was down here by about 2:30 pm. We spent some time with them in the play park here in the hospital, but by far their favorite spot was Marnie's Lounge. This place is great for kids like Braden and Merrick, with air hockey, a pool table, table hockey (like fooz ball), computer games, crafts, and a Wii system. We also enjoyed the pool and the water slide at the Delta Chelsea Hotel. But most of all, we enjoyed being together as a family again. Even though the circumstances are different and we aren't at home yet, we had a great time. The kids are so proud of their little brother and they loved the cuddle time with him too. Brian and the kids are staying one more night in the hotel tonight and then they hope to head home in the morning. And then hopefully before long we can be together again, in our own home, and sleep in our own beds!



We are so excited that the end is finally in sight and that Tyson has come so far in his recovery! It was hard to have patience at times. The hardest day was Monday, December 1, the day we were hit with the news of his condition. Looking back, I can't believe we made it through that day! Of course we know that God guided us through it and He had this all in His plan for Tyson and us.

Another difficult day was the day of his surgery, the waiting....the fear of the unknown. It was also pretty scary when Tyson suffered a lung collapse following his extubation. Last week was tough when Tyson kept throwing up and we knew that his feeding difficulties was what was keeping us here so long.
There are also many days that we remember with great joy and gladness! Every day when we awake and can spend another day with our boy is a reason to rejoice and give thanks! Of course, the day he was born was a very special day for us. God blessed us with another covenant son!The day God helped him through the surgery and he came out of it alive and doing well. The day he was extubated and he could start breathing on his own, the day he looked up at my face and followed me with his eyes, the day he was introduced to a bottle and he moved up to the fourth floor. And now we are awaiting the day that I can call Brian and say, "Honey, come and pick us up, we're coming home!"

Please keep praying.
Mel:)



















9 comments:

Tanya said...

Awesome, awesome, awesome!! Praise God that things continue to go forward! Can not WAIT to see you back at home!
Love you all! Scott, Tanya & Kate

Jeff and Karen said...

Wow! The news is awesome! It is great that Brian and the kids could come down to visit this weekend! It's nice to see pics of Braden, Merrick and Kenya holding Tyson and they look very excited to be holding him too!
We hope and pray that everything will go well so that we can come to see you MUCH MUCH MUCH closer to home!
Take care Mel (& Brian too!!) and see you soon!
k (&jjajh too!)

Chris & Vicki said...

Hey there guys! What a beautiful message! I am so thankful that Tyson continues to improve! God is so amazing and so merciful! Our thoughts & prayers are always with you guys and we pray for ongoing recovery & patience! Love you lots!

Anonymous said...

HI Mel:
Wow, awesome news!! It's great to see all the pictures of the other kids with Tyson too and that of you all spending quality time together!! We're thanking God with you too that He has made everything go so well so far. Hopefully you can be back on the 7th line there soon...
I always look forward to reading the newest blog; also because of your strong witness of faith!
Take care,
MaryLynne (and family)

Melanie said...

YAYAY!!! That is so exciting! Can't wait to have you home again seesta!! We hope and pray that things continue to go well and that we will see you soon.

Lots of Love:
Jay, Mel, Jaidynn and...Mikayla

Garth and Alida said...

We can't help but be amazed at God's grace and His care for you all at this time. Can't wait to see you guys again!
Garth and Alida,
Sara, Noah, Julia, and Nadia

Michelle said...

Looking back the way you did, it's incredible all of the things that you've stuggled with and overcome in the past month alone...God is truly good to help bring you through it all! And may He continue to answer all of our prayers and bring you home to live as a family once again soon! Hope you get your Christmas wish!!

love Joshua, Michelle, Evan, Tyler

Joanneke said...

We're eagerly awaiting the news that you can go home! God is so good!
Love,
Joanneke

Aunt Rita said...

Made a quick li'l poem for little Tyson..

Welcome Home dear little Tyson
God saw fit that you should be
Where the love surrounds you most of all
With your entire family

He saw you through many difficult days
As some were filled with great fear
But mum and dad knew who was in charge
To Him they drew their hearts near

Your future only the Lord knows well
And on Him we rely every day
For our prayers were answered every night
And yes, also in every way!

Each day you’ll grow much stronger
And run life’s amazing race
As long as you hold God’s hands, dear
He will guide you with His grace!

Someday your feet will take you places,
That only heaven knows,
But for today they're quite happy
Just to wiggle all of their toes.