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!

Nightmares...

*Yawn* I am really praying that Tyson's memories will soon fade into the distance. Since he got home from the hospital he's been having bad dreams that cause him to wake up in a sweat, yelling "No! Go 'way!" One time I even heard him say, "No poke arm!" He doesn't have the nightmares every night and last week they were starting to get better again. But since Tyson went in for the chest tube removal, the last two nights have been bad again. Yesterday he also had bloodwork, which isn't exceptionally painful, but I don't blame him for not trusting anybody anymore.
At nights there have been times that I go to Tyson's room and find him still sleeping, shaking his head back and forth, eyes squeezed shut, thrashing in his bed. When I bend over to stroke his head trying to "shhh" him, he starts hitting me in the face, just like the good ole' days in the hospital.
Last night was an exceptionally bad night. He was up about every hour. On nights like that, Brian and I usually take turns trying to calm him down, but each of us still wakes up every time Tyson does. Then just as we are finally dozing off, we'd hear Tyson crying again. He is suffering from a bit of a cold right now, so that might be aggravating the problem. Thankfully, by early morning Tyson finally settles well, so by the time he wakes in the morning, he has usually had a few straight hours of deep sleep. And he still naps during the day, so at least he can catch up on sleep at that time. Brian and I, on the other hand, we just walk around like zombies until this stage goes away :)
I know that there are probably some moms out there who deal with night-waking all the time, so I really shouldn't complain too loudly. But our kids are usually very good sleepers, so it's hard to get used to this. (My oldest 3 slept through the night by 3-8 weeks old. With Tyson, the doctors told us not to expect a heart baby to sleep through the night until he was a year old...Tyson was sleeping through the night at four months old :) But I'm not worried about myself as much as I wish that Tyson can move on and put these memories behind him. I feel sad for him that he walks around not trusting anyone, always scared that someone is going to give him medicine to make him sleepy, or wanting to draw blood from him.
If you are still praying for Tyson and are wondering which matters to bring before the Lord on his behalf, please pray that Tyson can soon put this traumatic experience in the past, and that he can sleep peacefully again at nights.
Mel:)

2 comments:

Tanya said...

Wow ... that's rough. Poor guy! Have been and will continue to bring this before the Lord in prayer.
Thankfully, at some point this to shall pass and you'll have to look back at the blog to remember these details. Praying for you all.

Anonymous said...

We are praying for you always!!! We will remember this specific request in our prayers as well.

Grant & Marg ... Lindsay & Shaelyn