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 nine 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!

Still fighting the Battle of Bugs

Tyson had a decent weekend and was able to return to school this week Tuesday.  We are thankful that he is coughing a lot less and is being weaned from his ventolin mask slowly.  The antibiotics have been successful in treating his pneumonia.

Unfortunately, he came home from school on Tuesday completely burned out and with a sore throat, headache and sore ear.  He was not able to go to school today because he is still recovering from this new bug.  He takes oregano oil really well, so a few drops under the tongue four times a day is taking good care of the sore throat, but his ear and head are still causing him a good deal of pain and he's been on Tylenol round the clock since Tuesday.  He is currently still on antibiotics for the pneumonia, so it's likely that the head/throat/ear/eye bug is a viral infection because otherwise the antibiotics would have fought it off.  Poor kid just can't catch a break!  How is it fair that he catches another bug while on antibiotics?  We're hoping the ear drops and oregano oil have him in tip-top shape by tomorrow evening for the school's musical production night!

These bugs have also resulted in five INR level checks within 10 days (and another one scheduled for tomorrow.)  The antibiotics have thrown his level for a loop, and I'm sure this new virus will too.  I'm so thankful for the CoaguChek machine so we can monitor his levels at home!  

After a very long winter, the up-and-down spring temperatures are finally here, but with it comes a lot of bugs. I know that with five kids, the chances of catching bugs are greater, and they can hit the kids all at different times, but it just seems that when one particular bug is finally gone, another one hits!  Addisyn had a very bad stomach bug in early April, then it hit a few others (not quite as hard,) then a head cold hit a few kids, then the pneumonia bug hit Ty and then it hit Addisyn (she thankfully is getting over it with the help of her brother's nebulizer.  Thankfully we have a few extra masks hanging around so we didn't have to wash them in between each use.)
Now we have this new head cold which has hit both Tyson and Kenya. 


One day at a time...

No comments: