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!

Moved up to 4D - Good Friday 2009

"But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed." Isaiah 53:5


What a Good Friday it is! Today we can remember God's gift of grace to us in sending His Son to pay for all our sins. It's days like today when I miss church that I realize how much we sometimes take for granted that it is indeed a privilege to go to God's house to worship Him.

When I called in to Tyson's room this morning to see him, I was informed that he was moved from his isolation room to room 53 in ICU. I sat with him for a while, then later crawled back in bed because I realized it was only 6:10am. When I called in later to see him again at around 8:30, he had moved again, but this time to a Step Down room on the fourth floor! He only spent a few hours in Step Down and then was moved into his own room on 4D, room 22. YAY!

Tyson is now off IV, and we are slowly increasing his Ng feed to just over 90 mls (3 oz.) The doctors want to start slowly again because his lungs are still really wet sounding, and we don't want to overdue his fluid intake. I asked the Nurse Practitioner Paula today about possibly starting breast feeding again today, but she wants to wait at least till tomorrow. So hopefully we can start that tomorrow and get that Ng tube pulled too.

Some of his lines are gone, one IV line clogged today so they pulled that out. Right now he still has a central line in his neck, an IV line in his hand, an Ng tube, oxygen prongs in his nose, and of course the sats monitor to monitor his O2 saturations and the ecg leads to monitor his heart rate. This afternoon he really struggled to keep his sats up, even on 2 litres of oxygen. The nurse was spending a fair amount of time running back and forth to our room, and was thinking about moving him back to Step Down where he could get more attention. But then she snipped the ends of the prongs that go in his nose and found they were a little kinked. Now his sats are really good again and he has been down to 0.5 litres of oxygen.

NP Paula told me that the lab from Headwaters called and they have found a Group B (or C) strep pneumonia. Tyson is now on IV antibiotics to treat the pneumonia. Once he is ready to go home, they will switch to oral antibiotics.

Before we can go home, Tyson needs to be breathing well on his own, need no more suctioning, be feeding well and his lungs must be clear. So those are the things we are waiting for.

Mel:)

2 comments:

Mel said...

OK first of all I LOVE that shot of Braden and Tyson...way too cute! That is such good news! He is a little fighter!! Good to finally know exactly what is wrong with him too! We will be praying that he will continue to progress so well and that you can all come home soon! Miss you lots and lots! Enjoy your time with the kiddies!! :) :) :)
Jay, Mel, Jaide and Mik

Anonymous said...

Hi Mel!
Love that pic of Braden with Tyson! SO adorable! Glad to hear Tyson is out of isolation and in 4D. Hope he continues to do so well. Hang in there little guy!
Hope he heals quick and can come home soon!
Love
Lea, Derek and kiddies!