The moment you walk into your child’s hospital room, it hits you. The sterile walls, the pungent scent of the hand sanitizer, the beeping monitors, the small hospital bed – it can all feel surreal. Even if you’ve been here before, nothing truly prepares you for this.

For the next few days, weeks, or even longer, this hospital will be your world.

Some of us have walked this road before. Some of us are here for the first time. Wherever you are on this journey, you are not alone.

A mother gently cradles her sleeping baby in her arms. The baby, dressed in a floral-patterned long-sleeve shirt and pink pants, has a white mesh cap on their head, likely securing EEG electrodes for medical monitoring. The mother, wearing a soft pink long-sleeve top, looks down at her child with a tender and loving expression. An IV line is visible running along the mother’s arm, indicating a hospital or medical setting. The image captures a moment of deep care and comfort between the mother and her child.

Whether it’s for a Stereo EEG (SEEG), an Epilepsy Monitoring Unit (EMU) stay, epilepsy surgery, or inpatient rehabilitation, this guide will help you:

  • Take care of yourself and your child
  • Support your family during the hospital stay
  • Stay organized and advocate for your child’s needs

What to Expect in the Hospital

Even with careful planning, hospital stays can come with unexpected turns.

Seizures don’t follow schedules. Surgeries and treatments can take time, and the path to recovery isn’t always predictable. Tests can take longer than anticipated.

“We were told about 10 days for my daughter’s S-EEG—I thought it might even be shorter. But her seizures had other plans. The first two weeks, she only had two seizures, so they kept us longer to be sure they had enough data. I wasn’t mentally prepared for that. When they said we might miss Christmas, it was hard—but I told them, ‘Keep her as long as you need, so we know exactly what’s happening inside her brain.’ These 22 days could change the rest of her life.” – Erica Hughes, parent

Timelines can shift. Knowing this ahead of time can help you prepare emotionally.

It’s okay to ask your medical team for realistic expectations, but remember that those expectations can change.

Every Hospital Stay Comes With Stress

Some hospital stays come with time to prepare. Others happen suddenly, throwing your family into chaos overnight. But whether you’ve had weeks to plan or found yourself here in an instant, the emotions can be just as overwhelming.

“I always found the planned stays had a lot more stress leading up to it, whereas the unplanned ones had a lot more stress once admitted.” – Ken Lininger, Parent Support Navigator and PESA board member

How a Hospital Stay Affects the Whole Family

A woman with light skin and blonde hair pulled back is holding a young child in her arms, gently kissing the child's head. The child, with curly blonde hair, is wrapped in a green blanket and has a yellow fabric bow on their shoulder. They are in a hospital or medical setting, with a hospital chair, medical equipment, and a whiteboard with handwritten notes visible in the background. The woman’s expression conveys deep love and care.

A hospital stay doesn’t just impact your child—it affects your whole family. Siblings miss their parents, routines are turned upside down, and stress takes its toll on everyone.

Siblings Feel the Absence, Even If They Don’t Say It

Your other children may not understand why their sibling gets all the attention. Some may act out, withdraw, or even feel guilty.

How to Keep Siblings Connected:

  • Send video messages
  • Give small surprise gifts
  • Create a countdown until things return to normal
  • Let them express their emotions—even if those emotions are anger, jealousy, or sadness

Parents Feel Pulled in Every Direction

Balancing hospital life and home life is overwhelming. Who will handle school pickups and bedtime? How do you balance work and hospital life? Should you stay at the hospital overnight or go home?

What Helps:

  • Rotate hospital shifts with a partner or trusted family member.
  • Let others help—meals, school pickups, or outings for siblings.
  • Ask about overnight monitors—some hospitals provide a bed-sitter for SEEG patients so you can get some rest or go home to family.
  • Accept that there’s no perfect answer—just the best you can do.

Relationships Are Tested

Stress and exhaustion don’t bring out the best in anyone. You and your partner may cope differently—one might research every detail, while the other wants to take it day by day.

What Helps:

  • Be patient with each other. You’re on the same team.
  • Give grace for different coping styles.

Extended Family May Not Understand

Family members and friends mean well, but they might say the wrong things—offering unhelpful advice, downplaying the situation, or asking too many questions when you’re just trying to stay afloat.

What Helps:

  • Appoint a spokesperson to handle updates. This can be a trusted friend who relays information and manages a meal train.
  • Set boundaries: A simple “We’ll update you when we can” is enough.

How to Be Your Child’s Best Advocate

The most important thing you bring to the hospital isn’t in your bag—it’s your knowledge.

“Be educated and the expert caregiver for your child. Know the medications they are taking. Bring everything with you. The hospital may provide the medications, but be ready if they don’t. Medical errors happen, but most are preventable by the resident expert—you.” – Ken Lininger, Parent Support Navigator

A baby with light skin is sitting in a hospital chair, wearing a pink bib that reads 'Daddy's Little Angel.' The baby has EEG electrodes attached to their forehead and scalp, with wires extending upwards, indicating they are undergoing a medical test. The expression on the baby's face is calm and slightly serious. The background shows a hospital setting with a crib, medical monitors, and equipment, including a heart rate monitor displaying the number '42.' A pink pillow with a floral pattern rests on the crib.

Stay on Top of Communication

  • Ask how updates will be given. Does your hospital do structured morning rounds?
  • Keep a notebook or notes app with sections for:
    • Team members (doctors, specialists, caseworkers)
    • Questions for the team
    • Major procedures and dates

Make Friends with the Nurses

  • Learn their names. A kind word or thank-you goes a long way.
  • Listen to their advice—they often know small but important details.

Trust Your Gut

If something doesn’t feel right, speak up. Always ask questions and double-check prescriptions before they’re given. You are not “just” a parent—you are your child’s expert.

Taking Care of Yourself (Even When It Feels Impossible)

You’ll feel exhausted but won’t want to leave, worrying the doctor will come the second you step out.

red and white flowers - close up.

“We quickly learned that doctors always seem to arrive as soon as you step away—even for just a moment! I know they don’t mean to, but it taught me to wait to take my walks until after rounds.” – Kevin O’Connor, Parent Support Navigator

What Helps:

  • Give yourself permission to rest. Even closing your eyes for a few minutes can help you reset.
  • Take breaks after morning rounds. Let someone else stay with your child—you don’t have to do it all.
  • A five-minute walk outside can reset your mind.

Find a Moment for Reflection

Hospitals have a way of forcing you to slow down. In quiet moments, big questions come:

  • Why is this happening?
  • What does this mean for our family?
  • How do we move forward?

Journaling, prayer, or simple reflection can help you process the experience. Write down your feelings and observations during this time.

Many people find comfort in bringing a book of wisdom, a journal, or a meaningful text for moments of reflection. Most hospitals also have chaplains, meditation spaces, or spiritual counselors available if you need support—regardless of your faith or beliefs. You don’t have to go through this alone.

A special note about grief

You may be feeling grief during your child’s hospital stay. Grief isn’t a straight path—you’ve probably felt its ups and downs before. It’s completely natural to feel lost, frustrated, or even hopeless. In the middle of it all, try to notice the small moments of joy—even tiny ones.

Take a photo or write down one positive moment each day. Maybe your child laughed at a joke. Perhaps a nurse was extra kind. These small joys add up.

Other parents who have walked this journey understand the fears, exhaustion, and hope that comes with each new day. Connecting with them—whether in the hospital, through our parent support navigator program, or online—can be a lifeline. Some find comfort in faith, believing there’s a purpose in even the most challenging moments. Others find strength in love, resilience, or the wisdom of those who have been there before.

However you make sense of this experience, just know that you are not alone. There is no “right” way to get through it—only the way that helps you keep moving forward.

“Grief is a cycle. You may have been through it before, but hospital stays can trigger a new cycle. It’s okay to feel it again. It doesn’t mean you aren’t strong—it means you are human.” – Ken Lininger, Parent Support Navigator

A young child with light brown hair sits in a wheelchair, wearing a pink frilly headband and a colorful blanket draped over their shoulders. In front of them, a person in a blue shirt and khaki pants is pulling a red and blue wagon filled with stuffed animals, blankets, and other personal items. A shiny 'Get Well' balloon with a smiling face and colorful polka dots is tied to the wagon. The setting is a hospital hallway with large windows, bright lighting, and a polished floor. In the background, a seating area with a few people is visible.

Packing List: What to Bring and What to Leave at Home

Clutter = Stress

Hospitals are small spaces. The more stuff you bring, the more overwhelming it can feel. Stick to essentials.

For Parents and Caregivers

Comfort Essentials:

  • Pillow & blanket
  • Noise-canceling headphones
  • Eyemask (hospitals are bright at all hours)
  • Warm socks, slippers, sweatshirt, and layers

“Consider sleeping in sweats, as pajamas can lead to embarrassing interactions with medical personnel in and out of the room at all hours. Then you are always presentable and can run to get coffee without having to get changed.” – Emily Marino, Parent Support Navigator

Personal care items:

  • Chapstick, lotion, dry shampoo, shower shoes & caddy, bathroom wipes
  • Room spray or lavender essential oil for a personal touch of home
  • Personal medicines in a day-by-day container

Sanity Savers:

  • Notebook & pen for keeping track of medications, doctor names, and questions
  • Long phone charger (hospital plugs are never where you need them!)
  • Laptop or tablet to stay connected or get work done
  • Books or an e-reader for downtime
  • Magazines for when you have limited brain power
  • Streaming device (Fire Stick, Roku, or HDMI cable)
  • Laundry bag & detergent pods (some hospitals offer free laundry)
  • Post-it notes or paper & tape, and a Sharpie (some parents put a note on the door requesting that the nurse return in an hour if your child finally falls asleep, or indicating that you just stepped out for a coffee with your cellphone number if the doctor comes by).

Food & Drink

  • Some parents bring snacks and coffee.
  • Others keep it simple and grab food from the hospital.
  • There’s no right way—just your way.
  • If sharing a room, check before bringing food—some people are sensitive to strong smells.

“I like to bring my Keurig and my own creamer!” – Melinda Hughie Blalock, Parent Support Navigator

A young person with short dark hair and light skin is lying in a hospital bed, propped up on pillows, smiling at the camera. They are wearing a maroon and white shirt and gray sweatpants, with one leg bent at the knee. The hospital room has a Golden State Warriors theme, featuring a large wall decal of basketball player Stephen Curry in action, along with multiple Warriors logos and related decorations. The medical equipment, IV pole, and bedside monitor indicate a hospital setting.For Your Child or Teen

Medical essentials

  • Bring a written list of medications, including dosages.
  • Bring the actual medications if possible—hospitals don’t always have the exact formula or dose.
  • If your child has a G-button, special formula, or medical equipment, bring extras. Hospitals don’t always have backups.

Comfort Items:

  • Favorite blanket, stuffed animal
  • Cozy sweatpants, adaptive shirts with snaps or zip-up PJs
  • Cards, messages, or small surprises from home can brighten hospital days.

A green and beige stuffed bear with gray ears is dressed to resemble a patient. The bear has a white and blue bandage wrapped around its head, with the word 'FREE' written on it, and is wearing a disposable face mask covering its nose and mouth. A round badge on its chest reads 'Good Times' with an illustration of a roller coaster. A person wearing a gray sleeve is holding the bear’s arm. The background shows a hospital bed with white sheets and a blue railing, suggesting a medical setting. A young child with light skin and brown hair styled into two small buns is lying in a hospital bed, eyes closed, appearing to be resting. They are wearing a blue hospital gown with a pattern of small figures. A soft gray teddy bear with a red ribbon is tucked into their arms, along with a white blanket. A hospital identification bracelet is on their wrist. The child is covered partially by a handmade quilt with pink, blue, and white patches. The setting includes a white hospital pillow and medical equipment visible in the background. A purple and pink stuffed animal with floppy ears is lying on a hospital bed, partially covered by a green blanket. A medical oxygen mask with tubing is placed over the stuffed animal's face, connected to a breathing apparatus. The background shows a hospital room with a bedside table holding a cup, a bowl of snacks, and other medical supplies. A glass window or door is visible, revealing a hallway outside. A young girl with shoulder-length brown hair and light skin is sitting up in a hospital bed, smiling brightly. She is wearing a light green hospital gown and yellow non-slip socks. She holds a plush lion toy close to her chest. The hospital bed is covered with white pillows and a light green blanket, and medical equipment is visible in the background, indicating a hospital setting.

Entertainment:

  • Tablet/iPad (download movies & games in advance)
  • Books & audiobooks (Yoto or Tonie boxes are great for younger kids)
  • Activity books & card games
  • Mini backpack for SEEG box (if the hospital doesn’t provide one) so your chld can move around

Hygiene Must-Haves:

  • Baby shampoo
  • foaming sponges
  • baby oil (for removing EEG leads).

A young child with curly blonde hair, wearing a light blue button-up shirt, gray sweatpants, and red Converse sneakers, is sitting on a blue mat, attentively watching an adult. The adult, wearing a colorful sweater and beaded necklace, is demonstrating a procedure on a baby doll dressed in a hospital gown. The doll has multiple electrode wires attached to its head, connected to a small medical device. The child has an electrode sticker on their leg, possibly for an EEG demonstration. The setting appears to be a therapy or medical play session in a clinical environment, with wooden cabinets and a plastic bin visible in the background.

Pro Tip: Child Life Specialists can bring toys, crafts, LEGOs, therapy pets, or music to help keep your child engaged. They can also help prepare your child for what to expect during their stay.

A young child with medium skin tone is sitting upright in a hospital bed, wearing a white EEG cap with straps securing it under their chin. They are engaged in an activity at a hospital tray table, holding a pen and gesturing with their hands. The table has colorful markers, highlighters, a remote control, and a toy car. A stuffed giraffe is resting on the bed behind them. The background features medical equipment, including a telephone, cords, and monitoring devices mounted on the wall, indicating a hospital setting. A young child with light skin, a head bandage, and a medical head sensor is sitting on a green mat in a therapy or hospital room. They are wearing a black and white panda onesie with pink accents and holding a plush pink bunny. In front of them is a control panel with large colorful buttons, which they are interacting with. Behind them is a sensory therapy setup featuring tall bubble tubes filled with water, floating rubber ducks, and strands of illuminated fiber-optic lights cascading down. The background includes a sink, counter, and medical equipment, suggesting a clinical or rehabilitation setting. A young person with short dark hair, wearing a graphic t-shirt, is seated at a table engaged in an art activity. They are using alcohol ink paints on tiles, with multiple bottles of colorful ink spread out on the table. They are wearing disposable gloves and appear focused on their artwork. Beside them, an adult man wearing glasses and also wearing gloves is smiling while participating in the activity. The background features a play area with shelves containing toys and games, suggesting a hospital or therapy setting.

Final Thoughts: You Are Not Alone

Hospital stays push you to your limits. But you will get through this.

  • Take deep breaths.
  • Accept help.
  • Find small moments of joy.

“Even though we’ve been on this journey for over a decade, every day feels new. Epilepsy is never clear-cut. But the most important thing to know? You are not alone.” – Erica Hughes, parent

A child with light skin, glasses, and a head bandage is sitting in a hospital bed, smiling and posing with a person dressed in a white Easter Bunny costume. The child is wearing a white pajama top with colorful designs and blue striped pants, and they have an IV line in their arm. The Easter Bunny character is holding a yellow tote bag and playfully tilting its head. In the foreground, a large white Labrador Retriever therapy dog, wearing a gray vest, is lying on the hospital bed, looking calm. The background shows a hospital room with medical equipment, monitors, and supplies.

Hand signed

A young girl with long dark hair is lying in a hospital bed, wearing a gray sleeveless shirt and a white head bandage. She has a relaxed expression and is holding hands with another young girl beside her. The second girl, with light brown hair, is smiling brightly and leaning against the hospital bed rail. She is wearing a black top and colorful polka-dotted pants. In the background, there are medical devices and a cluster of balloons, including a pink Piglet balloon and a yellow sun balloon, adding a cheerful touch to the hospital setting.

Need More Support?

Helpful Research

Epilepsy Monitoring Unit Frequently Asked Questions

Child Life Services in an Epilepsy Monitoring Unit

The Multidisciplinary Team in the Treatment of Patients With Epilepsy

about the author

Audrey Vernick is our Director of Patient and Family Advocacy. She is the parent of a child who had hemispherectomy for seizures caused by stroke. She holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She also serves on the International League Against Epilepsy’s Social Work and Social Services Section.

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