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!

Post-Op Appointment Update # 2

Another change of course...
Kathleen the nurse practitioner phoned bright and early this morning. Yesterday she sent away the fluid draining from Tyson's JP for testing again. If you can recall from an earlier post, there are three levels that are tested when they send the fluid away. Triglycerides, chylomicrons, and lymphocytes. If any one level is higher than the hospital protocol's set limit, they will treat as chyle. Last time they tested, the triglycerides were very high, but not higher than their limit. (Limit was 1.1, Tyson's level was 0.99) This time the triglyceride count was very good (0.39 because he's on the minimal-fat diet) but his lymphocytes were very high, higher than the hospital's limit. This means that there has likely been some sort of damage to Tyson's lymphatic system during surgery. The chylomicrons were still negative, but since there have now been two levels way too high, they are now considering this a chylothorax and will be following the proper hospital procedures to treat the chylothorax. If we hadn't followed their "recommendation" last week to have Tyson on the minimal fat diet, we would now be "ordered" to start following it anyway. So we are one week ahead of the ball game in bringing down his counts. (Unfortunately, he has to remain on the minimal fat diet for 6 weeks AFTER the tube has been removed!) Also, because it is now being treated as chyle, they are going to follow that protocol, meaning we are starting Tyson on steroids TODAY. Kathleen is calling in the prescription this morning to a local pharmacy here, and Tyson will be starting it as soon as we can. The steroids aim to strengthen and heal the lymphatic vessels that have been damaged and as a result are too porous, that is why they're leaking. I am praying that one week on steroids is enough to bring the fluid draining down, and that we won't have to go through the whole TPN in the hospital. Please pray along with me, that we can avoid another lengthy hospital stay.
Thanks.
Mel:)

1 comment:

Aukema Family said...

What a great call you made going on the lowfat diet a week ago already ! PTL...
We WILL be praying the steroids work and the hospital stay will be very very very short.