Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

What’s wrong

on February 17, 2012

Officially:

“chronic kidney disease stage 5 secondary to reflux nephropathy/obstructive nephropathy of his left kidney (UPJ obstruction) as well as small, echogenic right kidney ”

And from his most recent admission:

“Primary Diagnosis: Failure to thrive, CKD stage 5”
“Other Pertinent Diagnoses/Problems: • Prenatal hydronephrosis • Vesico-ureteral reflux • Acute kidney injury • Premature birth • Renal dysplasia • Renal failure • Hyperkalemia • Metabolic acidosis • Anemia of chronic renal failure • Hypophosphatemia • Hyponatremia ”

Not on that list is hyperparathyriodism

This website has a good explanation of Vesicoureteral Reflux, which is where I think Teddy’s problems started. The VUR he had was caused by a genetic abnormality and resulted in severe hydronephrosis (water on kidney) in the womb.

Reflux is categorized, Grade I is very mild, Grade V is very severe. His right kidney has Grade V and his left has Grade IV.

ALL of the websites you will find about VUR or hydronephrosis emphasize that this is very mild, doesn’t affect children’s lives, and usually resolves on its own. Please note: Teddy is that one for whom it’s not mild, it does/will affect his life, and will not resolve on its own. It seemed pretty evident on prenatal ultrasounds that this was going to be the case, making all of those well-intentioned “it’s probably nothing” or “I’m sure it’ll clear up after he’s born” comments really super irritating.

Teddy’s left kidney was severely damaged by the hydronephrosis; that side also had a upj obstruction. His right kidney never developed properly to begin with.

 

 

Short Medical Dictionary:

nephropathy: damage to or disease of the kidney

echogenic: doesn’t show up like it should on ultrasound

hydronephrosis: urine stays in renal pelvis (part of the kidney) instead of being urinated out of the body.

dysplasia: abnormality of development

Hyperkalemia: abnormally high levels of potassium in the blood

Metabolic acidosis: too much acid in the body fluids

Hypophosphatemia: low level of phosphorus in the blood

Hyponatremia: not enough sodium (salt) in the body fluids outside the cells

hyperparathyriodism: overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). The parathyroid hormone regulates calcium and phosphate levels and helps to maintain these levels.

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