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12 Ways To Advocate For Your Child While They're In The PICU

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No parent wants their child to end up in the hospital, but it can happen to anyone. It's important to know how to advocate for your child in the hospital so your little one can get the best care possible, and have the best possible experience during an otherwise scary time. Your child, and their doctors and nurses, will thank you.

In the PICU (which stands for Pediatric Intensive Care Unit), nurses take care of children who are sicker than most, or who have experienced traumatic injuries. They know firsthand just how much mom or dad advocating for their kiddo can help on their journey to healing. In fact, Christina Odom, BSN, RN, a PICU nurse at Wolfson Children's Hospital of Jacksonville, tells Romper that nurses love seeing parents involved in the day-to-day workings of their child's care.

"A parent advocating means being present for daily rounding, asking any questions they have, being hands-on in their child’s day-to-day care, and being vulnerable alongside their child throughout their stay in the PICU," she says. "Having a parent or family member present to advocate for a patient is extremely refreshing as a PICU nurse. Unfortunately, we are often put in situations where family is not present or proactive in a patient’s care, and it can be difficult for the staff and potentially affect the care of the child."

"Advocating means being a voice," Calli Riley, RN, a PICU nurse at Children's Hospital Colorado, tells Romper. "Most children don’t have one, which doesn’t mean they can’t say yes or no or give a blunt opinion, but they don’t always understand why something is happening and why they’re going through this experience. Each child is unique and their parents know them best. I can’t emphasize enough that parents are the experts on their child, and we're the experts on medicine, and merging those together is really the ultimate goal."

So, when it comes to your baby, how can you make sure their PICU stay is as positive and productive as possible? Here's what these child health pros have to say.

1. Attend Daily Rounds

"Every morning there are daily rounds where all the physicians and people caring for your child are there to talk about what’s happening today and tomorrow," says Riley. "Make sure you know what’s being discussed and that you’re comfortable with the plan, and able to share your voice at that time."

Darcey Ansley, PICU director at Children’s of Alabama, tells Romper that morning rounds are the best time for parents to get updates on their child's case (and who's working it).

"Parents who attend morning rounds have the opportunity to hear what the doctors, nurses, and therapists are saying about their child’s progress, ask questions, and be part of the daily plan, like sitting up, or trying to keep child calm while weaning them off medications. Parents are the constant; nurses and doctors change."

2. Ask All The Questions

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Riley and Odom agree that parents and providers should all be on the same page. That means asking each and every question you may have about your child's procedures, medications, anything.

"Ask again and again," says Riley. "How are you doing that? Why are you doing it? Do I need more information? Make sure you understand. If you don’t understand, clarify, or have someone else explain it to you in a different manner."

Odom says, "Even if you think that it may be a silly question, or maybe you already asked the question, but you want to clarify the answer, always be in good communication with the nurses and physicians. I carry extra composition books and pens in my work bag to give to families so they have a place to write down any questions they may have."

3. Bring Items From Home

Nikki Clay, BSN, RN, PICU nurse at Wolfson Children's Hospital of Jacksonville, tells Romper that making your child's hospital room feel more like theirs not only makes them more comfortable, but helps staff get to know them.

"Bringing items from home, and photos or videos of your child, are some of my favorite ways to personalize your child’s care," she says. "Often in the PICU our patients are not able to fully communicate with us due to equipment or medications, and letting your child’s personality and interests known to others helps us to bond with you and your child."

4. Keep A Routine

It's hard to imagine keeping a routine when your world is turned upside down by a PICU stay. But because children are creatures of habit, any steps from their usual routine you can incorporate will help them feel normal.

"Encouraging their normal home routines as much as possible can have a huge positive affect on children," says Odom. "Children are very routine, especially at a young age, and maintaining any kind of consistency in a stressful situation may help the patient to have a better experience."

5. Don't Be Afraid To Speak Up

Parents dealing with surgeries, medications, therapy and more all at once can easily feel overwhelmed. And if you're not sure that the treatment being suggested is right for your child, it can feel difficult to bring it up. But your kiddo's care team wants to hear from you in these situations.

"At any point a parent is feeling uncertain about the care their child is receiving, or not receiving, they can ask for a second opinion," says Ansley. "Asking to speak with their physician about whether or not this is the best way to treat their child, in a calm, nonaccusatory manner, and would like to have another physician come and evaluate and talk with them is totally OK. Healthcare staff do this with their own loved ones! We all want to make sure we are getting the best care we can. If the second opinion physician thinks differently, there can be a professional discussion with the family about their choices."

Clay often reminds her patients' parents that they will never regret standing up for their child.

"Never be afraid to be the 'squeaky wheel.' No one will ever know your child as well as you do, and when you feel like something is wrong, keep telling the medical team. The wise ones will listen. Parents can have hard discussions with physicians by leveling with them. Acknowledge the work the physician has done to help your child, and explain that you truly feel like another perspective on your child’s care is needed. If certain parts of the care the physician has planned do not make sense to you, or you feel may harm your child, express that. Never let anyone make you feel small for fighting for your child," she says.

6. Ask About The Hospital's Resources

Riley recommends asking your child's nurse about other staff members who can help meet your family's needs.

"Sometimes as nurses we forget to bring them up, so ask about your resources. We have child life specialists there to help children cope emotionally and psychologically while being in the hospital. It can be a traumatic experience and they’re wonderful for helping patients — and their siblings — with coping. Those people are specially trained to provide that support. Social workers, chaplains, all of these people are available for families' needs."

7. Share Tips & Tricks On Calming Your Child

No one knows your child better than you do. If you know of ways to keep your child calm during shots or bandage changes, share that with their nurses.

"Children are different, and I think that goes across healthcare," says Riley. "If family members have tricks up their sleeve or know a way a task or procedure can be done more successfully and cause less stress or trauma, it helps everyone involved, especially the child. For example, if you have a kid with sensory issues, ask us, 'Can you turn the lights down or provide a distracting toy?' Any detail you can give is super helpful."

8. Follow The Rules

Hospitals, especially in the PICU, have a lot of rules. It can feel restrictive to parents who are there often, but remember that every rule is in place to keep your child safe and get them healthy again.

"Your child is our main concern," says Ansley. "There may be times the healthcare team will ask you to do something or give you directions, like, 'Please do not get the child up without asking,' or, 'We don't allow the parent to sleep in the bed with the child.' All these are examples of real safety concerns that have happened — falling, suffocation, interruption of power for a lifesaving piece of equipment — and we want to prevent any harm to patient and family."

9. Fight Germs Like It's Your Job

Who knew practicing good hand washing could be another way of advocating for your child's health? This also means telling sick loved ones that a visit may be better saved for when they're well.

"It's important that families understand that germs can be spread very easily from them to the patient, and from the patient to them," says Riley. "We also have patients that are immunocompromised and very sensitive to any outside infections. Maintaining good hand hygiene, sneezing into your elbow, and proper sanitizing is very important for all family during their child’s stay in the PICU."

10. Take Care Of Yourself, Too

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"Self-care is one of the main ways a parent can advocate for their child," Ansley says. "If Mom or Dad are never sleeping, eating, or getting away for a break, it will take its toll on them and will affect their ability to handle even the little things. Children pick up on stress. We encourage parents to let another trusted person relieve them for a few hours. PICU is only the first part of the journey, and the part where most of the care is being done for the child by the healthcare team, so rest when you can, eat healthy, and utilize trusted caregivers for respite. You will need to be ready!"

Riley acknowledges that single parents may have a harder time stepping away from their child's bedside, but don't be afraid to ask your care team for a breather.

"We’re responsible for the child while they’re in the hospital," she says. "You can take breaks. If you feel the nurse is too busy we have nursing assistants we can bring into the room to hang out. We also have volunteers there for that reason: they’ll hold babies, play games, and let you go get coffee and shower."

11. Be Hands On

When parents can help with a task, it may make kiddos more comfortable than a stranger doing the same thing. It's also a great opportunity to learn from your child's nurse how to change bandages, give medications, and more before going home.

"Ask to be involved in activities such as bathing, changing diapers, or putting lotion on the child," says Ansley. "Always discuss with the nurse beforehand so there are no potential issues, like dressings coming off, or tubes falling out. We want parents to participate in whatever is safe for parents to do."

12. Keep Advocating After Discharge

Being discharged from the hospital doesn't mean advocating for your child is over. Riley says to keep your child's health a priority until they're fully recovered, just like you have in the hospital.

"Keep in mind those rules about sick visitors or too many visitors," she says. "Your kid was in the hospital for a reason, and rest and healing are important. Just because they go home doesn’t mean they’re 120% now. Don’t take them and exert them at the park, or let them go to school if they’re not feeling great and there are sick contacts. Maybe they restart school part-time, doing half days or couple days a week. Just make sure that whatever you’re doing is what is best for them despite what their normal schedule should be."

Experts:

Christina Odom, BSN, RN, PICU nurse at Wolfson Children's Hospital of Jacksonville

Calli Riley, RN, PICU nurse at Children’s Hospital Colorado

Darcey Ansley, PICU director at Children’s of Alabama

Nikki Clay, BSN, RN, PICU nurse at Wolfson Children's Hospital of Jacksonville