Scars and Battles; Rohan has done it all with Grace

Rohan will be turning 9-years-old this March and his days are just like any other developing kid. Except Rohan first begins his mornings with an anti-rejection medication to suppress his body’s immune system from recognizing his kidney transplant as a “foreign invader” and attacking it. His mother, Jenna, one of MGA’s Certified Nursing Aide (CNA), ensures he has his hydration bolus feeds throughout the day to keep his new kidney, named RARK, healthy and hydrated. After a day at school, or at home, Rohan finishes his afternoons with piano lessons and then one more medication in the evenings before doing it all over again the next day.

All of this is because Rohan was diagnosed with Post Urethral Valve Obstruction and Neurogenic Bladder when Jenna was 26 weeks pregnant with him. Post Urethral Valve (PUV) only occurs in boys and can develop during pregnancy. It can cause issues if it blocks the flow of the developing baby’s urine from the bladder. With neurogenic bladder, the muscle nerves that should control the bladder do not work the way they should. This leads to bladder control issues and can be caused by any variety of nerve, brain, or spinal cord issues.

It was not until Rohan was born that they knew the extent of his conditions pertaining to his ureters and kidneys. For Rohan to be born the doctors needed to induce labor due to the excess amniotic fluid in his bladder. Right after birth, he was taken into surgery immediately where it was determined he had stage 5 reflux of urine into his ureters and kidneys which had resulted in internal damage.

As Rohan got older his bladder began to slowly stop working. As time passed, the challenges the family faced changed. Jenna says when he was a baby “it was just making sure he was getting enough nutrition and taking his medications, so that’s why he got a G-Tube.” His next hurdle was the Mitrofanoff procedure which is a surgery to assist with bladder emptying.

By November 2020, Rohan was diagnosed with Bilateral Legg-Calve-Perthes Disease, a condition that occurs when there is not enough blood supply to the femoral head of the hip joint. Jenna shares that “the challenge has been letting him be physically active enough for his mental health, but also trying to not walk around and stay non-weight-bearing off his hips, so his femoral head bones have a chance to grow back.”

Even with all of the procedures Rohan had to endure, in May of 2021 he went into renal failure and needed a kidney transplant. The past 10 months have included many hospital stays and walking the tightrope between infection and rejection to keep his new kidney working well.

Fortunately, MGA has been able to help support Rohan and his family over the years. Jenna has been a part of the MGA family as a CNA for almost a decade now. She is able to provide care for Rohan through the Colorado CNA program. This gives parents, relatives, and others who meet Colorado’s eligibility requirements and licensure rules the opportunity to care for their loved ones and receive pay for carrying out those duties. “I was in nursing school when Rohan was born. I had my Bachelor of Science degree in Community Health and went back to school for nursing. I already had my CNA license, so it was a convenient transition to become my son’s full-time CNA caregiver.” She found MGA through a Medicaid referral and is thankful for how supportive they have been for not only Rohan but the entire family. She would recommend MGA to others, sharing that she is grateful for how much they cheer her and Rohan on!

As Rohan and his family continue their journey, Jenna shares that “one thing I wish people knew about my son’s diagnosis is that from the outside, when you look at him, he looks like a typical developing boy, but on the inside, there are many scars and this little guy has faced big battles throughout his short life, so far. I would want people to know that we need to give these medically complex kids lots of grace in everything they do. These life-changing diagnoses do not have to be devastating. Your “normal” might look different from other kids and other families, but you can still live a happy, joy-filled life if you choose to look on the bright side of your circumstances.”

With that, Rohan and his family continue to make it apparent to share their journey and spread awareness of kidney disease. Every year they participate in the National Kidney Foundation Kidney Walk and are thankful to have an amazing community of family and friends that have been there every step of the way.

 

 

“Take life one moment at a time and always celebrate even the smallest victories along the way!”

 

 

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