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!

Silly Antics Means He's Feeling Better And Ready to Go Home!
Ty slept super well last night and didn't need any O2 at all.  His O2 sats stayed 83ish or slightly higher all night.  Sats monitor was allowed to come off today to free up a finger, with 'spot checks' every 4 hours to make sure he's maintaining good saturations.  The Dr saw him this morning and said he doesn't sound a whole lot better yet so we'd better stay a little longer.  That's ok, Tyson is having an ok time.  His IV line is only connected for the duration of his med infusion.  Because he's eating and drinking well, he doesn't need IV fluids so he doesn't stay connected.  It sure is nice for him to have free hands to move around and the ability to take an occasional short walk around the hospital.

I called our medical/travel insurance company today to inquire about how Tyson's hospital stay would affect his coverage for our upcoming trip to Florida next week.  The representative told me that Tyson would still be covered for all his pre-existing health conditions that are stable and controlled - including his heart condition - with the exception of pneumonia.  So if he catches pneumonia while we're down in Florida, we won't be covered, but if anything else happens, we still have coverage!  WE ARE SO EXCITED TO HEAR THIS!  IT MEANS WE ARE STILL GOING TO FLORIDA!!!  :D Once Tyson gets home from the hospital, he will remain on oral abx for a few days and based on past experiences, he will be the healthiest he's ever been in a long time by the time we're ready to leave!  So we shouldn't need to worry about pneumonia....and I'm pretty sure that warm Florida sunshine will do him a world of good!   (And boy am I ever looking for a nice holiday after the past week I've had.)

A Visit From Banner Reporter Alex - She Brought Captain American!
Today we were supposed to meet with a reporter from the Orangeville Banner.  Since we couldn't meet at our house as planned, Alex decided to come visit us at the hospital!  And Tyson loved her because she brought him a Captain America action figure, which he hasn't put down since he got it! 
Last night Tyson's Aunt Joni came to visit and she brought him a Ninja Turtle colouring book and a brand new pack of markers.  Today when I told him that Grandma was coming for a visit, Tyson asked me, "Is she bringing me a present too?"  LOL  Spoiled much?  Grandma did bring lunch and his sister Addisyn....whom he loved teasing and the feelings were mutual.  *sigh* those two....

They Love to Hate Each Other

Hey Look!  They Aren't Fighting In This Picture!
This afternoon I ran into another friend in the hospital.  She and I are both Heart Moms from small-town Shelburne, and we met on a Cardiac Sick Kids support group on Facebook.  Once we discovered we both lived in Shelburne, ON we instantly became FB friends and started chatting, with intentions to eventually meet up together.  So far I have bumped into her twice - and BOTH times were in the hospital!  The first time was in the halls of Sick Kids while we were visiting one of Tyson's heart friends earlier in January, and then today we bumped into each other at Headwaters.  We have to stop meeting at the hospital and try to get together for tea sometime, once everyone is healthy again!

Hopefully tomorrow we will get to go home?!  I am trying not to get my hopes up, because we really truly never know....but Tyson is going to start doing cartwheels out of his bed soon if we're not careful ;)

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