Superhero Ben

Our story with Ben started prenatally, when we found out he would be born with a Single Ventricle heart and would require 3 heart surgeries to survive. But this story is focused on our superhero who had a complication after his second heart surgery (the Glenn).

As Ben was recovering from his surgery in the ICU, a milky white substance started to appear in chest tube, indicating chylothorax (chlyous effusion). He was doing extremely well outside of the effusion, and we were moved to the ‘step down’ unit the next day. Ben was started on oxygen and a medication, and the effusion cleared enough to be discharged within a week after surgery!

About a week and half later at home Ben seemed off; he wasn’t eating well and had low energy. We called Cardiology and rushed him to the ER and a chest X-Ray confirmed that fluid reaccumulated. After being readmitted, a chest tube was placed to drain nearly 8oz fluid from Ben’s chest. Cardiology and Lymphatics teams confirmed it was chylothorax and prepared us for a longer stay to address the effusion.

We began a close partnership with the Lymphatics (Interventional Radiology) team to develop a care plan for Ben designed to be as least invasive as possible while addressing the effusion. We were so thankful to have this team at Nationwide Children’s Hospital and didn’t have to consider looking at other children’s hospitals with a Lymphatics Specialty. Together with the specialists at Nationwide Children’s, we developed a detailed plan to modify Ben’s diet and medications to heal his lymphatic system.  Over the next 7 weeks inpatient, Ben never stopped smiling. Between regular chest X-rays, blood draws, and intense feeding changes, the doctors and nurses helped keep Ben in great spirits and communicated the path forward.

Ben’s effusion cleared after following the treatment plan and he was discharged with a clear plan to monitor his health while continuing to make diet modifications.  Today Ben is a happy and healthy boy.  We are so thankful for the Interventional Radiology team (Sarah APRN & Dr Lillis) & our Cardiology team and their partnership to ensure the best care for our superhero.

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Our story with Ben started prenatally, when we found out he would be born with a Single Ventricle heart and would require 3 heart surgeries to survive. But this story is focused on our superhero who had a complication after his second heart surgery (the Glenn).

As Ben was recovering from his surgery in the ICU, a milky white substance started to appear in chest tube, indicating chylothorax (chlyous effusion). He was doing extremely well outside of the effusion, and we were moved to the ‘step down’ unit the next day. Ben was started on oxygen and a medication, and the effusion cleared enough to be discharged within a week after surgery!

About a week and half later at home Ben seemed off; he wasn’t eating well and had low energy. We called Cardiology and rushed him to the ER and a chest X-Ray confirmed that fluid reaccumulated. After being readmitted, a chest tube was placed to drain nearly 8oz fluid from Ben’s chest. Cardiology and Lymphatics teams confirmed it was chylothorax and prepared us for a longer stay to address the effusion.

We began a close partnership with the Lymphatics (Interventional Radiology) team to develop a care plan for Ben designed to be as least invasive as possible while addressing the effusion. We were so thankful to have this team at Nationwide Children’s Hospital and didn’t have to consider looking at other children’s hospitals with a Lymphatics Specialty. Together with the specialists at Nationwide Children’s, we developed a detailed plan to modify Ben’s diet and medications to heal his lymphatic system.  Over the next 7 weeks inpatient, Ben never stopped smiling. Between regular chest X-rays, blood draws, and intense feeding changes, the doctors and nurses helped keep Ben in great spirits and communicated the path forward.

Ben’s effusion cleared after following the treatment plan and he was discharged with a clear plan to monitor his health while continuing to make diet modifications.  Today Ben is a happy and healthy boy.  We are so thankful for the Interventional Radiology team (Sarah APRN & Dr Lillis) & our Cardiology team and their partnership to ensure the best care for our superhero.

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