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!

No JP pull for Ty today...

We won't be going to Sick Kids today for a JP pull today :( Yesterday's drainage number was 28cc, slightly higher than they'd like to see for a JP pull. I was told a few days ago that any number under 30 cc for two days in a row would bring us toward a tube pull. But if we want to get technical, the protocol is that the volume has to be less than 2 cc per kg of body weight. Tyson is 13.5 kg X 2 cc = 27 cc. Tyson number was 28 cc. Ugh.
We will be going to Sick Kids tomorrow no matter what the number is. If it's a good number (under 27 cc) the tube will be pulled and hopefully we can be sent on our merry way?? If the number isn't low enough, Tyson and I will be staying until things get sorted out.
I am pretty disappointed about this. I tossed and turned all night wondering, "What's his number today? Are we going to Sick Kids? Are we staying home?" Brian and I both got up early this morning and packed our overnight bags, and kids' bags, we got the kids up for breakfast, we even had to wake Tyson up since he's a late sleeper. Only to find out we'd be staying home. I don't think I've ever packed bags and unpacked bags for us and the kids so many times in two months time. The kids have spent so much time away from home the last little while, I'm surprised they don't suffer from anxiety not knowing where they are going to be on any given day.
It's been great to be home for the holidays, but it hasn't been easy with the extra stress of the minimal fat diet, the meds, the JP tube care, always constantly watching his colour/breathing to make sure fluid isn't backing up into his lungs, making sure he doesn't fall or bang his head, protecting his sternum and not picking him up under the arms. It would be great to put this behind and us and have Tyson completely back to normal. He hasn't had a real bath in three weeks, he's been wearing pj's every day since his surgery because the JP gets in the way of his real clothes, he can't wear proper undershirts because of the JP, he hasn't been outside to play in the snow with his siblings because it's too risky with the JP, we don't take him to any public places which makes running errands and grocery shopping difficult. We've also been cooped up in the house for three long months in preparation for this surgery. It would be nice to get rid of this JP and have Tyson be normal again. *sigh* I know, all in God's time :)
I hate the idea of spending New Year's Eve in the hospital again, but at least it's not for any huge complication. I will get over it. Eventually. I just hate NOT knowing. If Tyson's numbers for today aren't as good as we'd like and we have to stay, Brian will still be spending NYE with his kids at the party we've been invited to and maybe come visit me and Ty the next day. Our family needs to stay as normal as possible.
I know I am pretty much ready to get off this roller coaster, but it just keeps going and going :(
Brian has kindly reminded me that as long as Tyson is blessed with life, the roller coaster will keep going and I need to accept that. With the pulmonary vein stenosis and the Coles procedure that didn't go 100% as planned, and now the AV block in his heart (lower heart rate,) it's not over yet. It will never be over for as long as Tyson lives. So I am going to try to enjoy the valleys as much as the mountains. The roller coaster is worth it, for every day that God gives us with our son. When I think about how much God loved us that He gave His only Son for us, I think WOW! That's a LOT of love! God loves us so much, and I take comfort knowing that there is a plan for Tyson and for us. Whatever that plan is, and for however long we have to ride this emotional roller coaster, we know that GOD LOVES US!
"This is love:
not that we loved God,
but that He loved us
and sent His Son
as an atoning sacrifice for our sins."
1 John 4: 10

1 comment:

Joanneke said...

I could read the roller coaster in your email too. You go from the long list of negative things that you need to cope with, to the reminder of God's great love for us and His gift to us in His Son. Take comfort in the fact that God will carry you through the valleys and will lift you to the mountain tops. He has given you a very special gift in Tyson and He will also provide you with all you need to care for Him.