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!

HOME AGAIN!

Praise the LORD, we are HOME!
Tyson's O2 was weaned during the day yesterday, and turned all the way off last night before he went to sleep. He managed to do very well through most of the night, with the exception of about 2 hours when he was in a very deep sleep and the nurse came in to turn it on to 0.5 litres...because he was satting low 70s. It's funny how in the beginning of this flu while Tyson was in Critical Care, we were thrilled with low 70s because that's pretty much as high as they were able to get, even on the hi-flow mask.
This morning when Tyson was awake he was satting high 80s, so the doctors on rounds decided that was good enough to send him home. The charge cardiologist actually asked me, "What do you think, Mom? Are you ok to go home today?" I smiled and said, "Welllllllll.....we really love you guys....but of course we'd love to go home." The nurse came in to take off Tyson's nasal cannulas while I was in the shower. When I got out, I asked him, "Hey Tyson! I can see your face!" And he pointed to his nose and said, "No Oh-two!" As we waited for Brian to come pick us up, Tyson spent the morning in the playroom. Both the nurse practitioner and a cardiologist fellow came in to listen to his lungs again. The NP was entirely impressed with how clear Tyson's lungs sounded! Let's pray they stay that way for the rest of the year! And I am so glad that Tyson could leave the hospital with memories of playing in the toy room, playing hockey in the hallways, hi-fiving and giving "props" to all the nurses; and not being cooped up in his hospital room!
When we headed back to his room for some lunch, his nurse wanted to do one more set of vitals, and hook him up to the sats monitor again, and his oxygen saturations were 89-92! I was shocked by this, as I've always understood he wouldn't sat that high because he had the fenestrated Fontan; I've always thought his sats would stay in the 80s until after the fenestration was closed during his cath in a few months.
Tyson needs to have an INR level done tomorrow to double-check that his warfarin dose is on the right track again. We get this done in Shelburne, so we won't have to make any more trips to Sick Kids, the LORD willing, until May. Tyson will be seen by our family doctor for a follow-up next week.
It's always wonderful to have everyone together at home again. The boys are clearly thrilled to be home, Kenya is very cuddly today, and Tyson was just super-hyper to be home with everyone :) When we got home this afternoon and I went to show Tyson his bedroom, I couldn't help but break down in tears of overwhelming joy. Every time he goes through a critical experience like this, and we are able to take him home in the end, it's like God is giving Tyson back to us again. God has once again spared his life, and we have been granted more time with him again. It just feels so good!
Brian and I would like to thank all the families who've stepped in to help take care of our other kids; Jeff & Hetti, Paul & Kim, Jay & Mel. Thanks also to Mom and Dad Spanninga, and Mom and Dad Kottelenberg; your love and support mean the world to us! And of course to all those who visited, it was great to have some company during the long days. And thanks to those who brought special gifts and toys for Tyson to play with. Most of all, thanks for all your prayers and petitions on Tyson's behalf. We serve an amazing God!
Brian and Mel:)

3 comments:

Tanya said...

So so so happy for you all! Welcome home. I hope we see you soon. T

Sara said...

Now Tanya can have her baby this weekend! Glad you are home again!

Anonymous said...

Brian and Melissa:
Ed and I are praying for you and your family, glad to see your "little" man is home again!
Love and prayers Ed and Cisca