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Nephrotic Syndrome

Nolan B.

Children

Nolan was born prematurely at 34 weeks by emergency c-section. At the time of his birth, Nolan was experiencing pulmonary hypertension and right sided heart failure. Due to said medical complications, Nolan was life-flighted to a larger NICU at only 3 days old. While in the NICU we had genetic testing completed that lead to Nolan’s diagnosis of Congenital Nephrotic Syndrome, Finnish type. Furthermore, he also was diagnosed with a profusion injury to his brain resulting in cerebral palsy. When Nolan was discharged from the NICU, we completed both daily albumin and Lasix Infusions in addition to numerous medications and supplements.

Nolan endured such severe swelling that in addition to his regiment, he required daily infusions twice/daily to keep him comfortable. Due to this, our medical team at Children’s Mercy trained us to provide Nolan his infusions at home through a Hickman Catheter. Also, we were trained to complete central line care as well as the required dressing changes. All the care that was provided by both our family and medical team resulted in Nolan’s growth and enabled him to remain relatively healthy for 3 years with our initial plan and close monitoring from said medical team…

The transplant made a huge difference in Nolan’s health. Though there has been progress, we are still working to recover skills lost during renal failure and dialysis, but we remain hopeful.

However, shortly after Nolan’s 3rd birthday, his kidneys began to fail. Renal failure not only progressed very quickly but was also very challenging for Nolan. During this time, he required a lot of sleep, experienced high blood pressure, discontinued eating, and regressed with many other milestones. Nolan then underwent dialysis for 5 months and remained very ill throughout before eventually receiving a kidney transplant from his father. The transplant made a huge difference in Nolan’s health. Though there has been progress, we are still working to recover skills lost during renal failure and dialysis, but we remain hopeful.

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Related Resources

Video

Newly Diagnosed Parents – Nephrotic Syndrome 101

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Nephrotic Syndrome Learning Experiment

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Understanding Primary Nephrotic Syndrome

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