Two solid days of doctors and nurses, ultrasounds, labs, and paperwork have moved us forward a bit, but not gotten us completely out of the woods. Bottom line: we’re hiking fast toward the cath lab next week and heart surgery on October 3, and it looks like it might be some tougher terrain with a heavy backpack.
And The Boy has had to stop by the side of the trail to pee three times in the last 24 hours. If you pee in the woods, and there’s blood and protein in your urine, but nobody hears it, does it still cancel your surgery? The poor boy—they tape a bag around his junk to collect the sample, but he’s just a wee lad in a state of perpetual dehydration, and so his samples just kept coming up short. So we had to keep strapping on the bag. When his sister had to give a sample, the nurse called the bag “a bandaid for her coochie”. But for him, it’s just a Wee Bag, for his wee sample. How embarrassing.
The word for the day? Nephrology. Yesterday, I had no idea that such a term existed, and today we met with our new nephrologist, who took the urine we collected on the ride in to the hospital and quickly determined that The Boy’s kidneys are not catastrophically failing (whew!). The blood that is present in his urine is not from the kidneys—it must be from somewhere farther downstream (irritation of the urinary tract from calcium depletion is the most probable cause, and is common in patients who take diuretics long-term).
At the same time, that great news is tempered by the fact that the protein found in his urine is not attributable to anything except some problem with the filtration in his kidneys. This is not related to Will’s long-term usage of Lasix, so more testing is in order. In any case, our careful kidney doctor seems willing to yellow-light the catheterization now scheduled for Tuesday with some extra precautions, and to follow his new patient in the coming months.
But our biggest concern came yesterday. It seems that the narrowing of The Boy’s new-and-improved aorta has progressively worsened (when your cardiologist squints at the echocardiogram screen and says, “that’s his aorta? That can’t be his arch!”, you can feel a bit anxious). It will need to be widened, either in the cath lab with a balloon angioplasty, or in the operating room with open heart surgery. But it needs to be expanded, and the sooner– the better.
This could explain some of our frustrations over The Boy’s lack of desire to eat by mouth. With the cardio workout of taking a bottle, he really glistens up a sweat even though we take breaks for him to catch his breath. Quite possibly, his refusal to eat is protective, since his aorta seems significantly narrowed and his body is receiving less blood. Indeed, he is relatively blue most of the time.
On the other hand, he doesn’t seem to be altogether diminished by any of this—he hollered for nearly the entire trip home today. Still, we can’t help but wonder if our cardiologist’s normally efficient demeanor is a bit more edgy, and if her speedy referring and scheduling of these appointments and surgeries is reflective of her growing concern for his well-being. So it was a bit harder to put The Boy in his bed tonight, worried as I am.