"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our nine 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, December 28, 2010

So I figured out completely by accident today that the amount of steroids we're giving him is only HALF the amount we were supposed to be giving him! I felt like a pretty big heel when I called the NP to let her know about it. There was a miscommunication (of lack of) between the pharmacist and me, and we were only giving him 5 mg twice a day, instead of 10 mg twice a day. The NP was pretty thrilled that his body has responded so well to only half the steroids, we've been seeing good results with only half! It hasn't done Tyson any harm to only have half the amount, but it would have produced even better results if we'd given him the correct dose right away. So we're going to see what Tuesday and Wednesdays numbers are, then make a decision on Thursday morning if we'll head down to Sick Kids for a tube pull on Thursday, or if we'll give him a few more days. They would like to see numbers hovering around the 30 cc mark for two days before the tube comes out, then wean him off the steroids at home and continue with the minimal fat diet for 6 weeks. So we might be going to Sick Kids on Thursday, or it might be Friday, or it might be Saturday. It all depends on what the real dose of steroids does to his drainage volume. We've also taken the JP off suction, giving his body a chance to expel the fluids through other means and the JP only collects the "extra" amounts. We'll see what happens. We've been told to pack our bags still just in case, because Murphy's Law says...


Sara said...

Never liked Murphy! :-)

Anonymous said...

Hey....was hoping to come for a visit on Wednesday morning....we'll see how Hanna is feeling.
Keeping you guys in our prayers....