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!

Summer Days

Tyson and two of my other kids were enrolled in 2 weeks of swimming lessons in early July.  Despite the heat wave we're experiencing right now, the weather for the 2 weeks of lessons was not very conducive to a child with a heart condition.  Tyson has a hard time with body temperature regulation, and the weather for the 2 weeks of his lessons was cold, damp, and rainy on all but 3 days. As a result, he was not a happy camper during his lessons.  He was cold and blue and did not have a very good time at all!  But his teacher Alison made the best of it and handled him very well. 

I managed to take a few pictures on one of the nice mornings we had.  

Blowing bubbles
Starfish
This is how Tyson spent most of every lesson.  He was cold and blue and not very happy.  His teacher made the best of it, and laughed because despite his tears, he still did everything she told him to and even said a tearful 'thank-you' at the end of each lesson, even though it was clear he was not enjoying himself!
He was too scared to jump off the diving board, so Caely, his teacher from last summer helped him down while Alison caught him
For his last lesson we let him take Mickey Mouse off the diving board with him.  I'm so thankful the weather was warm on his last day.
Here is Alison keeping Mickey Mouse dry as they swim across the pool to the diving board
All done with lessons and trying to warm up
Kenni

Kenni jumping off the diving board
Merrick diving over a noodle
It's too bad that the weather wasn't extremely warm for swimming lessons.  He really does enjoy the pool at home.  The kids are in it EVERY day!  The scuba gear was a small investment considering that it keeps the kids entertained for literally hours every day.
My scuba kids.  (Devon in the background)
Tyson with big brother Braden. 

Summer is going very well so far.  Tyson is healthy, so what more can we ask for?  We enjoy life so much more when he's not coughing and we're not worrying about whether or not he has pneumonia again.

The kids spend most of their time poolside, or on the trampoline. They like to have the sprinkler running underneath the trampoline as they play mini-sticks or bounce around.  Even Addisyn enjoys the slippery, wet sprinkler.



 They also enjoy spending time with our new puppy Tazer.  He is a pretty easy-going puppy so far. 


Isn't he SOOOO cute?!?!

Braden sure adores him

And Tazer sure adores Braden too!

Braden trying to teach Tazer to come down the deck stairs.  He goes up but won't come back down.
The heat and humidity of this week has pretty much worn us all out, but for a kid with asthma AND a heart condition, imagine how much more tired he is! Tyson suffered a bit of heat stroke late last night, after three days of extreme humidity.  Any asthma sufferer can attest to how difficult it is to breathe when the air is so thick.  Combine that with a heart condition, and that's a brutal combination.  We let him go to his soccer game on Tuesday night to see how he would do, even though there was an extreme weather advisory.  We thought it was a good opportunity to see if Tyson really knows when he needs to slow down.  Well, he was only able to play about 10 minutes of soccer before he was completely out of energy.  The first half wasn't even over and he was by my side because he needed a break.  We dosed him up on ventolin to see if that would help but he sat on the sidelines for a long time. Then when he finally went back on the field again he only lasted a few more minutes before he gave up entirely.  I'm glad that he knows his own body well enough that he knows when he has to slow down.  He loves soccer so much, and I didn't want to let the other kids play and not let him go, but I am still glad to see he knew enough that his body couldn't handle it.  

Wednesday was another very muggy day, and Tyson spent most of the day sluggish and red-faced.  We spent most of the day in the pool and we try to hydrate like crazy on these days, but then we had the misfortune of our well pump breaking down.  So, we had no water!  Brian called a few uncles for help/advise and Uncle Willy came over to help dig out the well pump.  It turns out that the hose had corroded from the pump and Willy happened to have a spare part at home to fix the problem. So after a few hours of work and minimal cost, our water pump is fixed and is now running again.  We're so thankful that the problem wasn't too serious!

Today is a laze-around-the-house kind of day.  The kids are watching a movie downstairs while I sit and blog.  Last night Tyson spent several hours tossing and turning in his bed, crying and complaining of a sore tummy.  He complains of a sore stomache from time to time, and we keep a close eye on him to make sure the symptoms are nothing more than just that.  (Fontan kids will develop liver problems so we're always on the alert for weird symptoms or complaints of pain in that area - or the chest area.)  After several hours of him not sleeping and either Brian or I going to his bedside to comfort him, I gave him some Tylenol to knock him out. Later on he did throw up a little, but not much for what you'd call the flu.  I finally crawled into bed with him at 5am and then we both slept till 8am.  I'm pretty sure it wasn't the flu because the first thing he asked for in the morning was his hot chocolate, and then proceeded to wolf down a pancake for breakfast.  He's definitely not himself yet but I'm almost positive it was heat stroke.  We're working hard to hydrate him better today. 

We're hoping and praying that the humidity calms down very soon.  These poor heart babies never catch a break.  In the winter it's nothing but colds, flus, and pneumonia, and in the summer they can't breathe through the humidity :(  Praying for a break in this heat soon.

Melissa
































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