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!

A Great Summer So Far

Since Tyson's last hospital stay from pneumonia in June, he has been doing great!  We have continued on with his nebulizer treatments twice a day.  He's on the ventolin and pulmicort twice a day, no matter what, because that's what his body seems to need at this time.  Whenever we take him off the ventolin completely he seems to get really grumpy and doesn't sleep well either.  So we will continue with this treatment plan throughout the whole summer and fall, and also consult with the respirologist again when he sees him in October.  

We just came home from our camping trip to Arrowhead Provincial Park in Huntsville.  It was one of our best holidays ever.  Not only did we have a great time, the weather was great, the company was great, and best of all:  Tyson stayed healthy and far away from any hospitals!  (During the past 2 years, Tyson visited the emergency rooms of 3 different hospitals while we were camping.)

Tyson really enjoyed this camping trip, playing with two friends who are both the same age as him.  His energy levels amazed both me and Brian!  One morning we went for a 3 kilometer hike along a rocky trail with lots of tree roots, big hills and small hills, and the air was thick with humidity.  We were not expecting him to make it to the end of the hike, but he did it!  He pretty much ran the first half (not quite keeping up with the others his age,) but did slow down the second half.  It helped that he was in a great mood so there was nothing stopping him.  We did stop several times for a quick break and he was huffing and puffing by the end of it, and his face was beet red, but he did it!  No piggy back rides, stroller or wagon rides, just Tyson.  Walking.  The whole way. 
Taking a quick rest on our long hike
Smile!  I did it! 

Arrowhead is a really beautiful park!  The campground is established in the middle of a huge bush, so the sites are very private with lots and lots of trees.  There were lots of trails to hike or bike, and the kids really enjoyed the waterfalls.  Since the water levels were so low this year, everyone was able to walk along the falls and the kids could even play right in the falls.  With Tyson being on a blood thinner we worried about him falling on the slippery rocks, so we held his hand tightly the entire time. He really enjoyed cooling off in
                                                                                                        the water.


Braden, Merrick, Amy and Kenya in the back;  Cole in the front.

 
Enjoying the beach with Mom and Addisyn

Tyson also had a mask buddy on this camping trip.  Kevin also has asthma so since they both needed masks in the morning and at night, they often had a "mask party" together where they played games together or read books together.  Teagan also joined us on the mask parties; she was the only one really excited about it ;)  It was cute.

Tyson did so well during this trip.  For the most part, he was happy and healthy and for that we are so thankful!  One night when he was looking particularly pink, I checked his sats and he was satting 94!   I can't believe his sats can be that high given his heart and lung status.  God sure is looking after our little heart warrior!

Overall it was an enjoyable and relaxing trip.  Every year as the kids get older, camping gets easier and easier.  It was different again this year having a newborn along with us, but she is a pretty easy-going baby and was no trouble at all.  We are so grateful to have been able to spend this time away with our family and friends.  The memories that were made on this trip will be something we hold onto for a very long time.  We just hope and pray that Tyson can enjoy these types of events for many more years to come.

No comments: