Parenting in the PICU (Pediatric Intensive Care Unit)
Kelli Argento never thought she would be a “PICU Parent,” but when her son Ryder was unexpectedly born with a congenital heart defect, that’s exactly what she became. During his young life Ryder has had multiple heart surgeries that have required him to spend more than 100 days recovering in a Pediatric Intensive Care Unit (PICU). Knowing how far her heart warrior has come since birth has helped Kelli stay humble and full of gratitude for the little things she sees him do every day.
“When I see Ryder getting dirty outside, running through a field, going to school, even just laughing…I am grateful for that. Watching him form his own personality and become interested in his own things is so incredibly rewarding. I don't take simple activities, like running to the grocery store with Ryder, for granted,” says Kelli. “There is no right or wrong way to be a mom while you are in a place like the hospital, but I have learned so much from our time there and want to impart my wisdom.”
The following tips and resources, though not meant to replace medical advice, have been shared by Kelli as a way to help parents who may be facing a long hospital stay with a critically ill child.
Packing & Preparing for the pICU
Some stays in the PICU are emergent and unexpected. Other stays occur following a planned course of treatment or surgical procedure. During our first PICU stay (which lasted around 100 days) we learned a lot about the best comfort and care items to bring from home. If you have time to prepare for an extended stay in the hospital with your child, here are some items I recommend bringing (with approval from the medical care team, of course).
Toys, blankets and stuffed animals from home to create a familiar environment.
Pajamas that your child is comfortable wearing.
Favorite snacks that your child will likely ask for after surgery.
A wagon to help your child get up and around while transporting their needed medical devices.
Your child may have questions about their upcoming stay in the hospital. You can ask your child’s medical team if they have any resources they recommend to help a child understand what the experience will be like.
This PICU Passport from University of Chicago Medicine is an example of a tool you can use to prepare for a hospital stay.
If you have other children who will be visiting your child in the PICU (like a sibling, cousin, or friend), this activity book from ICU Steps may be a helpful tool to use in preparation before they arrive at the hospital.
I spent a lot of time searching for books that I could read with my son that would be upbeat and encouraging. Since I couldn’t find exactly what I wanted, I wrote a book that suited my needs. Wayne the Warrior is inspired by my son and our times in the hospital.
Listen & Learn
Neither my husband nor I come from a medical background, so everything we experienced in the hospital with our son was new to us, including many of the words being said by our healthcare team. I remember the respiratory therapists continually using the word “tachypnoeic,” which I later learned means “increased rate of breathing.” In the moment, hearing words you don’t understand can make you fearful—but if your child has an emergent medical need a doctor won’t have the time to sit down and explain every word.
This kid-friendly dictionary from Akron Children’s Hospital can help you find definitions to common medical terms that you may hear in the PICU. The definitions are written specifically for children and adults without medical training.
For more complex and less common medical terms, you may need to refer to a medical dictionary. This medical dictionary from Miriam-Webster is very detailed and more suited for medical professionals. If you need more information about a term, bookmark the definition and make a note to discuss it with your child’s care team.
Record & Review
Early on in our first PICU stay, a fellow parent shared the value of journaling and taking notes. I began writing down everything I observed about my son’s care including information about each medication he was taking, why he was taking each one, and when/why a medication was changed. I wrote down every accomplishment and goal that was met, and every question that I wanted to ask.
At times it felt unnecessary, until one day a member of the care team was wondering why Ryder’s oxygen level kept decreasing. I immediately spoke up and reminded them of another incident when his oxygen levels had decreased, and showed them where it was documented in my journal. The timing of each incident suggested that a new medicine was causing the decrease. In this particular case, journaling allowed me to make a substantial contribution to my son’s care. Looking back over the journals I kept during his treatment also gives me a sense of how far we have come.
A simple notebook can be used to document your child’s hospital stay. If you are interested in something more focused and robust to help chronicle long-term care needs, check out the free journaling tools available through the Josie King Foundation.
Join the Care Team & Be Your Child’s Voice
Being an active parent to your child when they are hooked to tubes and wires is difficult and intimidating. My son was three weeks old before I changed his diaper for the first time, and I did so with the help of a nurse. It was then that I realized I could be an active participant in my son’s care and assist the nurses with his basic needs. These care tasks helped me to bond with my son, and helped me to stay connected to him when he was in the care of others.
Hospitals are busy places, and your child’s doctors and nurses will likely be juggling several patients. You know your child best and you are their number one advocate. If you aren’t comfortable with what’s going on, speak up. If you don’t think your new nurse is the right fit for your child, ask for the charge nurse or a nurse manager to discuss your child’s needs. It may seem scary to speak up, but I found that the hospital was always very accommodating.
Complex Child Online Magazine has a variety of articles with tips on how to find your voice and be an advocate for your child.
Boredom Busters
As your stay drags on it can be difficult to keep your child entertained in the hospital. Request the support of Child Life Specialists to help your child stay busy and upbeat during the ups and downs of being in the hospital. They can bring toys, activities, books, and movies that match your child’s interests. They may be able to connect you with music, art or pet therapy, depending on what’s available at your hospital.
If you’re looking to bring some fun or excitement to your child’s day, check out the Gifts & Care Package resources listed in the Red Treehouse Wish-Granting Support Pathway. You may find that your child qualifies for some special gifts from organizations that exist to help make sick kids smile.
The TelePlay program from Project Sunshine is available to children who are hospitalized or battling illnesses at home. Visit their resource page to learn how to connect with their fun digital activities.
Take Care of Yourself, Ask for & accept Support
You will hear time and time again that you have to take care of yourself in order to care for your child. As much as you can, try to do the most basic things to keep yourself going—take a walk, read a book, drink water and eat something every day. If you are concerned about your child being alone while you take care of your basic needs, ask a nurse to remain in the room with them. If you are struggling to meet your basic care needs, ask for and accept the help that is available around you.
Ronald McDonald House Charities (RMHC) is perhaps best known for providing housing for families while their child is in the hospital. But did you know that many RMHC Chapters have services right inside the hospital? There may be a Ronald McDonald Family Room—a place for you to eat, rest, recharge, shower, or do laundry—in the same building where your child is being cared for. Use the RMHC Chapter Locator to see if there are services near you.
Going Home - Life After PICU
Transitioning home after a long stay in the hospital can be very challenging. Your child will likely have follow-up care appointments where you can continue to ask questions, so make sure your basic needs are covered before leaving the hospital. My pro-tips include:
Create an emergency plan. Mine is a simple, half sheet of paper that I can hand to a first responder if needed. It brings me comfort knowing that everything is written down in case I am unable to explain things quickly in a crisis. Update your emergency plan at every follow-up appointment.
Discuss a communication plan with your medical team before you leave the hospital. Ask for phone numbers that will get you to the right person quickly if you have a question. Ask for help navigating messaging apps and tools that your doctor may use. And ask them to give you a timeline of how quickly you can expect a response if you reach out.
Consider getting an Emergency Alert Accessory for your child. I chose a seatbelt accessory for my son, but there are lots of options available.
Being 100% prepared to have your child experience a critical illness is not possible, but any preparation you are able to do may help reduce your stress or anxiety. The PICU parent club is one I never thought I would be in, but I have learned that leaning on other parents in the club is the best way to get through it. It takes a village—and we are a strong one.
Additional Resources & Parent Picks
After PICU is a resource site designed to help parents, kids, and siblings with the transition home following a critical illness.
Finding Your Support Community is full of resources to help you connect with parents with experiences similar to your own.
If your child has received a rare diagnosis, the resources in this guide may be helpful as you navigate their specific care needs.
Contributed by: Kelli Argento. Kelli is mom to a child born with Hypoplastic Left Heart Syndrome (a congenital heart defect), a former elementary teacher, and author of Wayne the Warrior.