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!

Nursing Again - Saturday, April 11, 2009

Tyson has had a good day. Last night he was pretty grumpy and didn't settle to sleep until 1:30 am but once the Tylenol kicked in, he was ok. This morning he didn't nap well since he kept on being interrupted by this nurse or that therapist. But when the boys came in to say hi, Tyson had great big smiles for them. This afternoon he was back to himself again, and we even got a few laughs out of him.
Mom and Dad Spanninga came to visit this afternoon. We spent some time at Marnie's Lounge playing games on the Wii. What a riot. Later they left and took Braden, Merrick, and Kenya home with them. The boys get to enjoy Uncle Derek and Uncle Jason's hockey game tonight with their Grandpa.
I also got to start nursing again. It is going well. Tyson only slept a half an hour this afternoon and is still awake right now. Brian is spending some quality hockey time with him so that I could take a break. I took a walk outside in the fresh air, boy is it nice out there!
Some more lines were removed today. The IV in his other hand is out, so now both his hands are free for him to inspect curiously, and chew on again. He also had the ecg leads removed. As long as the feeding continues to go well and he can take his meds orally, we can remove the Ng tube tonight! Yay! He is slowly being weaned from the O2. He's down from 2 litres this morning to 0.25 litres. It will for sure be gone by tomorrow. Then all he has left is his O2 sats monitor on his foot. All the wires will be gone from his hands and face.
So now we are waiting for Tyson to clear up his lungs, which is getting better and better. His cough is getting stronger every day. It looks like we should be outta here in a couple of days. Then it is a matter of Tyson becoming 100% again before his surgery can be booked. He will be on follow-up care 7-10 days after he is discharged from here and we will go from there.
I hope everyone has a blessed Lord's Day tomorrow!
Mel:)

2 comments:

Anonymous said...

YAY!! Nursing again! Wohoo!
Saw your adorable boys tonite at the game. The Flames won! Braden and Merrick were so excited!! So cute! Braden was telling me about the cheezies he got.
Glad Tyson is recovering well! Give him more kisses for us!
Lea and Derek, & kids

Anonymous said...

Glad to hear that you could spend some time with the other kiddo's this weekend! When I spoke to the boys on Good Friday they were so excited to get to see you and Tyson...oh and the idea of a hotel and pool probably helped too :) !!
It is good that Tyson is recouping well and we hope to see you up in this neck of the woods very soon!
Keeping you in our prayers!
jkjajh?