Nurses Deliver Patient Centered Care

May 7, 2015

As we celebrate National Nurses Week, Glynn Pilat shares how Accredo nurses are making a difference for patients with complex and chronic health conditions.

  • Immune Deficiency

As one of the 500 field nurses on Accredo’s Advance Therapies team, I work to deliver individualized care for patients with complex and chronic health conditions.

Once a month, along with my colleague, Lindsay Fogarty, I travel an hour to the home of two very special patients – 8-year-old twin brothers – to administer their IV infusions. It’s uncomfortable for any young child to endure a 7 ½-hour infusion, but these two patients face a unique set of challenges.

Both boys have been diagnosed with common variable immune deficiency. Without the infusions, their immune systems don’t work properly, and they suffer from constant colds and upper respiratory infections. They also have been diagnosed with autism, resulting in communication challenges and sensory issues.

The original plan to help these children was weekly subcutaneous immunoglobulin therapy, which is given under the skin and can be administered at home using a portable pump and small needles. In October 2014, the prescribing physician requested that the first dose be administered in his office, and the plan was to train the boys’ parents to do these treatments weekly. Unfortunately, the first infusion did not go as well as expected.

Since the boys speak very little and experience tactile sensory issues, they were extremely agitated. Despite receiving sedation medication, the children were overwhelmed. It required two Accredo nurses, the mother, and the office nurse to calm the boys and get the infusions administered.

You can only imagine how the boys’ mother must have felt. She could not go through this procedure on a weekly basis or put her children through this. The physician then changed the orders to monthly IV infusions in the boys’ home. Our nursing team discussed the case and best approach for their care. With the special needs of the boys, could we safely provide the home infusions?

Lindsay and I are both skilled pediatric nurses with years of experience working with infusion patients in their homes. We were touched by this case, and we volunteered to help.

We made arrangements to see the boys and ordered specific supplies from the pharmacy to make the infusions as comfortable as possible – arm boards, medical tape and pouches for the pumps. We called the boys’ mother prior to the visit to learn more about the boys’ specific behaviors and to explain in detail how things would be handled.

In November, we visited the boys for the first infusion. They were slightly agitated but did well overall. It was important that we understood their needs and challenges, and we assured them we were there to help them feel better.

We’ve been administering their infusions now for six months. The boys require a lot of supervision due to not sitting still and wanting to remove the IVs. Because they do not like things touching them, they will not wear the IV bags on their shoulder or waist. We spend a lot of time walking around with them and carrying their IV bags and pumps.

We’ve started to see some improvements in the boys’ health. They’ve only been on antibiotics once since we’ve started the treatment. They understand the routine of the infusions now, and since they’re more comfortable with us, they’ll sometimes play and laugh. They’ve also started using some words to respond to us – “yes,” “no,” “bye.” During a recent visit, one boy even said “thank you.”

Their mother has expressed how appreciative she is that we are able to help both boys in one day, and she is grateful for the improvement in their quality of life. That’s why we’re in this business. We love our jobs as nurses, and we want to help patients feel better. If one day a month makes a difference in this family’s life, every second is worth it.

Author Bio

Glynn Pilat
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