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!

Thurs. March 17, 2011

2:30 pm
Tyson had a good sleep last night, despite the fact that the nurse had to come in twice to do vital signs (12am & 4am) and once to give his IV Lasix (6:30am.) He managed to sleep through it all.
this morning he was out of bed for a while, playing in his room. The physiotherapist (who works on loosening up the mucous in his lungs) lent us a play mat for the floor so he can get out of bed and play on the floor. Since he's not allowed in the 4D playroom because he may infect other children, we are quickly getting bored. We blew some bubbles this morning and Clutter the Clown came with her bag full or toys and tricks. I've been reading him the same books over and over, and Mom is getting pretty sick of Treehouse....

Although his lungs sound like the are clearing up nicely, he is still coughing a fair amount. His sats remain right on the edge of 70, even on 2 litres of O2, dipping to low 60s when he get mad or has to cough. I am disappointed that the sats are so low still even on O2. They should be back in the low 80s at room air (off O2) before he can go home.

One of his IV lines came out yesterday so he has one free hand, but the other line has to stay in "just in case." The antibiotics have been discontinued because 3 days of IV antibiotics is like a week of oral antibiotics. At least now we can get rid of the IV pole in our room; its alarm went off twice last night because the line was kinked. Tyson likes to sleep on his side, but the IV doesn't like that. Well at least it won't wake us up anymore!

He's been switched to oral Lasix to help him pee out fluids. He is way less puffy now than he was yesterday. The swelling is almost all the way down and he lost almost a kilogram of fluid from yesterday to today.

The INR level was at 4.0 today, but the coumadin will continue to be held until at least tomorrow. He is starting to eat again so that should help him maintain a healthy INR level.

Overall his mood is what you'd expect from a sick two-year old boy. Grumpy and uncooperative most of the time. He's back to smacking me in the face regularly - good thing his Mama loves him so much :) It will be so nice to have my happy boy back again. I can hardly remember who he is anymore...although a small part of his personality came out when Clutter the Clown came to visit :)
9:00pm
Tyson's mood has improved since this morning. He wasn't too thrilled that we had to wake him up for his physio appt this afternoon and he remained in a snit for about an hour afterwards. Once he caught on to how to blow bubbles and pop them before they blew away, he was actually laughing. Laughing, I say :) We've just been hanging out, spending lots of quality time together reading, doing puzzles, colouring, and blowing bubbles. He even spent some time walking around the room today, although he is still very wobbly, like a baby calf learning to walk for the first time. We were able to take off his Ecg leads, so there are a few less wires attached to him. He still has his sats monitor attached to his big toe, and his O2 prongs attached to him with the tubing above his head. Unfortunately, the cables aren't too long so he can't go too far when playing in his room, only about 3 feet away from his bed :( He was pointing at the door today asking, "Play? Play toys?" He so badly wants to go to that playroom! When I told him he can't because he's sick, he started crying and stamping his feet....poor guy. Well, at least he has the desire to play again, that is a very good sign!
Thanks for all your prayers :)
Mel:)

2 comments:

Sara said...

If you could fix everything, you would. Poor little guy. Praying that you will be given enough patience, strength and rest and that somehow someone will cover the cost of your lodging for you.
:-)

Aunt Rita said...

So glad to read the updates on this blog. No one knows how hard it is for you all..Unless they have gone through something similar.
Praying for Tyson every day...
And for you Melissa, to keep strong.