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!

Tuesday's Appointment

Wednesday, January 14, 2008

Yesterday Vicki and I made the trek down to Sick Kids, with Kenni and Tyson in tow. I even bit the bullet and drove the way there myself, with Vicki carefully navigating me. We did make it there safely, even though I did go through a stop sign while we were still in Orangeville! Ooops!I asked her to drive the way back though, to alleviate some of the stress for me.

Over the weekend Tyson lost a bit of weight during the transition from bottle to breast. This concerned me a little because the nurse practitioner talked about maybe having to do one feeding by breast and the next by bottle, with formula-fortified breast milk. This would involve more pumping, which I wasn't crazy about at all. I was also a bit in disbelief, since my others packed on weight while I nursed them, so it didn't make sense that he had lost weight. But I guess Tyson wasn't getting quite what he should have been getting while my milk supply was being built up. I made sure that on Sunday and Monday I really fed Tyson like crazy to boost my supply and to get him to pack on some good weight. He managed to pull off a pretty good number on their scale yesterday and now I can continue breast feeding exclusively. Phew, no more pumping!

The nurse practitioner was very happy with Tyson's progress. His chest x-ray came back good, and there is no new fluid building up in his lungs! His colour looks good, his sats are good, good heart rate, etc. They were so pleased with him that we don't have to go back for another clinic appointment until February 4th. Then he will have a full-study echo cardiogram, a visit with the nurse practitioner, the dietician, and an appointment with Tyson's staff cardiologist Dr. Brian McCrindle. He is the doctor that first assessed Tyson's condition and made the final decisions about his surgeries. If I am not mistaken, we will also find out more information about when Tyson's next surgery will most likely be.
Tyson is behaving well. He is doing what typical babies do. Last night he actually slept from 11pm - 5 am and I didn't even feel guilty letting him do that, since I know he is back to gaining weight well again. It felt like a pretty good sleep!

So that is the news for this week. We will keep this blog updated again after his February 4th visit. Maybe I can post some pictures again soon as we are getting high speed internet hopefully some time this week.

Mel:)




4 comments:

Anonymous said...

That is wonderful news Mel! Congrats that you can continue to nurse him, I know how much you were looking forward to it!
Pretty soon he will be a little chubber!
How much does he weigh now?
Still praying for you!
Lea, Derek and kids

Eric and Jaclyn said...

woo hooo ! good to hear :)

Mel said...

Awww you added pictures!! Too cute!! :)

willowsprite said...

What a relief that must be for you! He definately looks well. Mom sent me the picture of Tyson in his new chair! Too cute.