My life was on a very structured path in 2009. I’d gone to college, gotten my degree, found a job, married my husband, bought a car and a house and a dog…and then another dog…and Ev had just passed the bar. Jackson was born, had his first birthday party. I was contemplating going back to work in the office and Ev was getting settled as a lawyer.
And then our lives took a sharp right turn.
I found myself on this road I didn’t know anything about and was ill-prepared to deal with. But just as other parents have before me, I learned. I asked questions and did research; I lived it. Then Jackson got well, and Abby came early. Their experiences could not have been more different, but at the same time, were so similar because Ev and I happened to be the common denominator.
For years I’ve struggled to find an outlet for all of this information inside my head. We’re talking A LOT of information. It’s both useful and useless, depending on the situation. On a conference call when I’m trying to remember marketing buzz words…nope…useless. When I get a personal Facebook message of a friend of a friend that’s dealing with a new cancer diagnosis or prepping for a CT scan with sedation…that’s me. I’m your girl!
So when the opportunity presented itself to join the CHKD NICU Family Advisory Council, I jumped at the chance to join. I thought it would be some volunteering in the unit or reviewing documents. It’s been that and so much more.
What is a Family Advisory Council? It’s a group of patients or family members, along with select members of hospital leadership, that discuss procedures, communication, advancements, new ideas and avenues for better family support. Family-centered care is really becoming the norm in pediatric healthcare. FCC bridges the communications gap between providers, patients and families. With children that have chronic issues, oftentimes the parent is the common denominator (sound familiar?) between specialist appointments, therapy and home. Moms in particular are the most familiar with their child, what they need, how they respond and what would work best.
I’ll give you a few examples:
- Jackson finished his stem cell transplant and was still on IV nutrition when he was physically well-enough to go home. I noticed when we cycled his TPN (IV nutrition), he would get really nauseous. It was counter intuitive to me to have IV nutrition if it makes you throw up. The oncologist was uncomfortable taking him off TPN to go home since he still wasn’t eating too much by mouth. But I pushed back – I’d observed him and I knew I’d have a better chance getting him to eat with anti-nausea meds and no TPN. The doctor listened. Jackson did fine.
- When Jackson’s radiation “mapping” was completed, the Radiation Oncologist met with us and reviewed where we would radiate to kill remaining cancer cells. It included his spine. I mentioned that didn’t sit well with me, and that I wish we could change it. I came home. I cried. Probably ate something fried or chocolate. Radiating the spine had so many side effects: stunted growth, curvature, weakness. The doctor called Everett and I back at home. He’d listened to our objections and they put their heads together, and were able to find a solution to miss the spine, but still hit all the spots they needed to get his cancer. Jackson’s the second tallest kid in his first grade class.
- Abby was on the vent for almost seven weeks before the doctors transitioned her to the CPAP machine. Extubating a preemie is a big deal. Abby knew that already since she’d extubated herself three times. (ABIGAIL LEIGH!) I knew that last week she was on the ventilator that she was ready to come off. I spoke several times to the respiratory therapist, the resident, her nurses. Abby was a feisty NICU baby and she didn’t like having things down her throat. The attending physician was very cautious, but kept saying “soon.” I remember he had the day off and another attending neonatologist included me in rounds. I pounced on him. I knew she was ready and I told him so. After I gave all my points, with the nurse backing me up with her own observations, he agreed it was time to give it a try. She did amazing; she went from ventilator to CPAP to high-flow oxygen in less than 48 hours.
Our CHKD Family Advisory Council provides a necessary melding of personal experiences and medical knowledge. It promotes teamwork and cohesiveness in care, while acknowledging that parents and staff are partners in getting children well enough to go home.
It’s important to know this: What is just a day at work for a doctor or nurse could be the most important day of their patient’s life.
I asked my fellow NICU Family Advisory Council members what they find most important about having a FAC and here’s what they had to say:
- It’s an amazing opportunity to be able to help those that were there for you at such a difficult time.
- It allows all stakeholders (doctors, nurses, lactation consultants, support staff) to hear a different voice. The family that has been discharged is completely different from the family that is in the middle of the crisis.
- It’s therapeutic for former NICU parents!
- No one understands what parents go through like other parents that have been in their shoes. Who better to advocate for them?
- It shows the hospital is really invested in the “team” aspect of care for the child.
- It breaks down barriers.
- It shows doctors and nurses the human side/reality of the emotions that the families go through that we may not otherwise share.
- We have a better understanding of each other and that affects how the caretakers perform their current jobs.
I can honestly say the FAC is my favorite meeting of each month. Someone usually cries while sharing their experience. We check up on each other’s kids and then get to work on paving a smoother path for other families. It’s one of the best things a hospital can do to show patients they are really serious about providing exceptional care. Besides this blog, it’s been the single-most healing thing I’ve done since my sharp right turn back in 2009.