Parent Q&A: Tips for home parenteral nutrition

lenox 2Thirteen-month-old Lenox Toth has an infectious smile and personality to match.

At 1-day-old, Lenox was diagnosed with midgut volvulus, a condition where the intestines are twisted, or form a kink, and suddenly cut off blood supply.

The tiny tot underwent a round of emergency corrective surgeries at Massachusetts General Hospital and one month later, was transferred to Boston Children’s Hospital for further surgical and nutritional management. He underwent an additional intestinal surgery at 2-months-old, and went home with his parents on home parenteral nutrition (HPN) management at 3-months-old.

HPN provides a home-based method of providing nutrition intravenously through a central line or PICC when a child cannot take food (or, is limited in how much food he can take) by mouth or enterally (through a feeding tube). The nutrients bypass the normal digestive system and enter the child directly through a thin tube inserted into a vein.

Under the care of Boston Children’s HPN team, including Dr. Bram Raphael, director of the Home Parenteral Nutrition Program, and with the unwavering support of his parents, Lenox gets the nutrients he needs in the comfort of his own home.

In recognition of HPN Awareness Week, Lenox’s mother, Frannie, shares some of her family’s experiences and offers helpful hints to manage parenteral nutrition care at home.

What are the benefits of home parenteral nutrition?

Just that: being able to go home. At first, the idea of managing IV nutrition at home seemed daunting. But after three months in the hospital, we were happy to have Lenox home.

What were some challenges you faced when you started home parenteral nutrition? 

The biggest challenge was overcoming our insecurities and finding our confidence. Neither my husband nor I have any kind of medical training. Plus, we were first-time parents. So in many ways, we felt like fish out of water. We have come a long way, but we still have trying moments.

Have you had any particularly trying moments?

With HPN, mistakes do happen, and questions are frequent.

About six months ago, I inadvertently mixed up my son’s two different PN and Intralipid pumps. It was 9:30 p.m.

I quickly paged Dr. Raphael, and he explained I would need to bring Lenox to the emergency room, where they would run some tests.

At this point, I started to panic. I was home alone, and our nurse had gone home for the night.

How could I do all the things I needed to do, by myself, in this agitated state?

Dr. Raphael transferred me to a nurse practitioner who coached me through all the things I needed to accomplish and stayed on the phone with me. And when we finally got the hospital, Dr. Raphael called several times to follow up and make sure everything was OK. I cannot express how reassuring it was to know that they are always there, just a phone call away.

What surprised you the most about home parenteral nutrition?lenox birthday

I was surprised by how quickly we acclimated to our ‘new normal.’

There are always going to be things that come up and catch you off guard. My advice is to stay calm in those moments of surprise and uncertainty. As the HPN nurse Mary Gallotto says, “As long as the child is safe in this moment, it’s going to be OK.”

After you’ve taken a deep breath and gotten your wits back, you can address the issue head-on. I’ve learned to troubleshoot and talk things through. Go back to basics. And when in doubt, never hesitate to call the HPN team—that’s why they are there.

Do you have any tips to keep your child’s spirits high?

My son is still very young, but to keep him entertained during medical interventions we sing a lot of songs or let him watch videos. We also try to wait until the last possible moment to lay him down for whatever the procedure is and have all the supplies set and ready to go. The less time he feels like he is being held down, or just generally not in control, the better.

Can you recommend any support groups or resources? 

Talking with other families dealing with similar medical issues is helpful. Having a child on HPN can feel very isolating, and we are encouraged to focus on the day-to-day since so much is subject to change. Meeting families who understand and who have been there is incredibly comforting. And it’s nice to meet kids who are a few years older than Lenox and who are managing just fine.

I also follow several Facebook support groups, including Boston Children’s Home Parenteral Nutrition (HPN) Program Facebook group.

Learn more about Home Parenteral Nutrition.