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 Five Post-Glenn - Sunday, May 17, 2009

"He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint."
Isaiah 40: 29-31


Tyson's chest x-ray from this morning showed some improvement and his saturations have gone up! The sats now sit in the low to mid 70's. The respiratory therapist also tried something different on him today. It's kind of hard to explain but we will do our best. It's a t-piece tube that connects to the tubing off the ventilator. It gives Tyson less CPAP pressure but still gives him oxygen. They sometimes use this as a test to see if he would be ready for extubation. Unfortunately, because Tyson was still intubated for the process, it was almost harder for him to breathe using this t-piece, since the intubator tube still goes down his throat and it is almost like having to breathe through a straw. Tyson was also quite agitated when they tried it so he wouldn't calm down enough to let us see if he could handle this well. So after ten minutes they replaced the t-piece with the normal ventilator tubes again and will try again tomorrow. Hopefully by then his sats continue to improve and he has less secretions in his lungs.
It is difficult for us to keep seeing Tyson in this condition because he always looks so sad. Sometimes when Brian or I stand by his bedside while they give him a deep-suction (to get the secretions out of his lungs) it seems like Tyson gets more upset because he just wants us to pick him up. He gives us this look in his eyes like, "Why aren't you helping me, Mom?" He does a lot of crying too when we stand by and stroke his face, the tears are streaming down his cheeks and his face looks distressed but there is no sound coming out of his mouth.
It is hard because we remember Tyson as being a lovable, smiley guy who now does not smile at us anymore. We can't blame him much, there really is no reason for him to smile at us right now. I think he is pretty confused as to why we aren't helping him or picking him up when he cries. I did get to hold him for a while yesterday afternoon because I couldn't wait any longer. I thought I could wait until he was extubated but who knows when that will be. It is a complex process for them to move him from his bed to my arms because of all the tubes, wires, but the ventilator is the biggest obstacle. I think his nose hurts when it gets moved around too much and I am sure it is pretty sore and raw by now.
The chest tubes were removed yesterday and the central line that went into his neck was also pulled out. This is a relief because they cause a fair amount of discomfort for him too. But once that breathing tube is out, he will feel so much free-er I am sure!
We are definitely ready to see Tyson extubated and move on to the fourth floor. It is difficult to see our son like this and we would really like to have the old Tyson back again. But on the plus side, Brian and I are getting really good at Sudoku puzzles!
Until next time,
Brian and Mel:)

5 comments:

Grant and Marg Kottelenberg said...

Hey Brian & Mel,

Just a note to let you know that we are following the blog everyday and continue to hold you up before our Father in Heaven Who sees all things. We pray that Tyson will continue to improve so that he can be extubated and that in time you all may return home. We pray that God will give you much patience, wisdom, comfort and trust. We hope that last night was uplifting for you both and that God revealed His presence mightily!

With love,
Grant, Marg & Family

Scott and Tanya said...

Hey Tyson buddy,
Get better soon. We are praying for you and thinking of you regularly even from so far away. Thanks to your Mommy & Daddy for keeping us updated. We are gonna race you home and we really want you to beat us!! Hope we'll see you in Shelburne when we get back!!
Love, Scott, Tanya, Kate & Alex

Joanneke said...

It must be so difficult not to be able to give Tyson what you so badly want to give him...To take away his pain, to ease his hurt, to comfort him and hold him whenever you want, to breastfeed him. May God continue to carry you through this difficult time, and provide you with the strength you need for each new day. Keep on keeping on!!
Love,
Joanneke

Aunt Rita and Uncle Jerry said...

Tears streamed down my face as I read the part about Tyson looking at you and wondering why you aren't "fixing" what hurts him...his look, of sadness and need. We can't imagine going through what you are...but by the grace of God I believe you are receiving much strength from Him. Thanks again for keeping us all informed Melissa. It is greatly appreciated. Be strong sweety....Tyson needs to see you strong, and I pray every night that God gives you this strength. Soon, and very soon we pray, Tyson will be on the 4th floor, and once he is extubated thing will become more normal too.
All the best Brian and Melissa!!

willowsprite said...

Me too. *hugs*