This hospital packing list is inspired by all of my time in hospitals with my son Oliver. We have had hospital stays as long as about a month and as short as one night. We’ve been there for brain surgery, cancer surgery, countless EEGs, cleanouts due to GI issues, g-tube placement surgery, c-tube placement surgery, VNS-placement surgery and VNS-explant surgery, and seizures, dehydration, and asthma, and the list goes on and on.
My packing list is for those who know they have a planned admission or surgery scheduled for their child. If you unexpectedly find yourself in the hospital and see this list, perhaps some friends or family could bring you some of the items to make you and your child more comfortable.
I also have an episode of The Inspiration Lab Podcast where I talk specifically about hospital stays for parents of kids and also for babies in the NICU. Please listen to what my friends shared about the experience from their perspectives as a doctor and as a nurse… I think you’ll appreciate their advice, candor, and insight into how the hospital system works.
I’ve also written a Crisis Checklist, which has lots of tips on how to manage highly stressful situations and calm yourself. Check it out here.
Alright, let’s get packing! I like to use backpacks — they are easier to get in and out of hospitals! We usually have one each (my husband Andrew’s, mine, and Oliver’s, which we hang on the back of his wheelchair/stroller). In the backpacks I like to have clear plastic baggies with different items for easy and quick access.
For Your Child
Button-Up/Zip-Up Clothes — helpful for surgeries and EEGs!
Nail Clippers — if you have a kid with special needs and can use a time they are sedated to clip their nails, it’s a win. The hospital will only give you a nail file.
Stroller/Wheelchair
Warm Socks
Diapers — if your child is beyond the age where most kids wear diapers, be sure to bring your own.
Blanket — we have a “hospital blanket” we’ve taken with us time and time again. It isn’t huge and it washes easily and it comforts Oliver when we’re not at home.
Chewy Tubes — for kids with sensory issues.
G-Tube Supplies
Formula, syringes, extensions, pump, cord, etc.
C-Tube Supplies
Water solution/recipe you use for flushing, bag you use for flush liquids, extension cords, etc. Currently we use a mix of saline and Castile soap.
Printed Medication List — I keep a running one for Oliver and I update the date at the bottom each time I change anything so I can easily make sure I have the most up-to-date version. You need to track the medication, the strength, the amount, when you give it, and how you give it. For the hospital, I print five copies to have; for an outpatient surgery or MRI scan, I print two; and for pediatrician visits, I just do one.
All Medications Your Child Takes — especially if your child is on unusual supplements (mitochondrial diseases is one reason this could be the case and it is for Oliver) or they are on a clinical trial drug (Oliver was in the Epidiolex clinical trial back in the day). They may not have the medication at the hospital to even give to your child, so be sure to bring your own supply.
Rescue Medications — for seizures, EpiPens, etc. Always bring those along just in case you have an issue on the way to or from the hospital.
Copies of Discs of Previous CTs, MRI Scans, Etc. — We have all of Oliver’s imaging scans in our safe at home and we try to make sure we have our own copy of every single one. The shared medical system Epic doesn’t show all the images from past MRIs and CTs, so doctors are SO HAPPY when we have the discs with us for them to review and compare.
For the Room
Fan/Noisemaker — the louder the better.
Black Trash Bags and Duct Tape — to make the room dark for naps if your kid is really sensitive to light.
Glass Markers — to write on doors, windows, mirrors, etc., if allowed. It makes your room a happy place for all.
Local treats for the doctors or nurses — this is a nice touch that won't go unnoticed. When Ollie had his brain surgery, we had a different candy and a different cute saying for each day that we put at the nurses’ station.
Fitted Queen-Size Sheet — for hospitals with the double-sized, fold-out couch beds, because they don’t have the right-size sheets ever and trying to “tuck in” flat, twin sheets is next to impossible. Also, if you’re old like me and want/need your specific pillow, make sure you put it in a NON-WHITE pillowcase so it doesn’t mistakenly get taken with the other hospital-owned pillows.
For You as the Parent(s)
Health Insurance ID Card(s)
Your Own Photo ID(s)
LOTS of snacks — preferably those that won't get crushed at a baggage screening if you have to travel; think trail mix. Snacks with protein are the most helpful and will help stabilize your blood sugar.
YOUR OWN medications, vitamins, etc.
Laptop and Laptop Charger
iPad and iPad Charger
Cell Phone and Cell Phone Charger
Moisturizer for Hands and Body — hospital air is super-duper dry due to all the filtration.
Lip Balm
Gum
Cottonelle Wipes
Feminine Products
Warm Socks
Sneakers — I found standing on the hospital floor for hours each day by Oliver’s bed was hard on my feet, so I always wear sneakers, not flip-flops or other shoes.
Dry Shampoo
Deodorant
Lots of Underwear — you can rewear your main clothing, but having fresh undergarments is a necessity!
Toothbrush(es) and Toothpaste
Brush / Comb
Hair Ties
Face Wipes
Glasses and/or contacts and contact solution
Refillable Water Bottle
Pajamas or Change of Clothes for Sleeping — I prefer yoga-type pants, a t-shirt that is long and covers my backside when I’m climbing in the bed, and a fleece or sweatshirt. Ideally, pockets on one of those things is helpful. You will likely get “something” on one of your outfits, so pack a few.
Eye Mask — if you can actually sleep with one, since hospital rooms are so bright all the time.
Pen and Paper — to take notes; a small notebook is ideal.
Shower Supplies — many pediatric hospital rooms now have bathrooms with small showers in them. Bring items like your shampoo, body wash, razors, etc. A shower can make you feel amazingly refreshed in a hospital setting.
Facial Moisturizer
Makeup — this isn’t a beauty pageant, but it also takes 30 seconds to put on mascara, and if that makes you feel more like “you,” then I say go for it.
Books and Magazines — or download some books on your e-reader or to your Audible account.
Toys & Fun Ideas for Younger Kids
You don’t need to go crazy with this because there will be a child life specialist who will come to your room and ask if you want any toys, etc. They have a good array of choices, so bring your child’s favorites and then rely on the team at the hospital for some new options if needed.
Bubbles
Play-Doh
Puzzles
Books
Stickers
Coloring Books and Crayons
Harmonica — if you’re brave enough.
Headphones — to cancel noise or to watch movies, etc., on electronic devices.
Before You Leave Your House
Get a house-sitter or neighbor to keep an eye on things for you.
Make plans for watering plants, dealing with trash and recycling pick-up, and handling mail and package deliveries with your sitter or neighbor.
If you have a pet, arrange for pet-sitting.
For Medically Fragile / Complex Kids
Make a symptom calendar that shows when each symptom or issue is happening. See the above image of one of Oliver’s for reference. This helps doctors understand what you mean when you say “things have been really hard” — the more data you have, the better they tend to be with “getting it.”
Take advantage of Post-its. We put large sticky notes in Oliver’s hospital room after two weeks of his health declining rapidly and having tons of tests, many of them painful, with no answers. Using these to map out his symptoms, the timeline, and our questions was the key to getting the mitochondrial disease diagnosis for him and sorting out why his body almost totally shut down on him.
We have a daily sheet we use to track Oliver’s inputs, outputs, meds, and behaviors. Here is our current one — we change it up quite a bit, but it helps inform one caregiver to the next to ensure he hits his hydration, caloric, BM, and urination goals each day. We also can write detailed notes about possible seizures, unexpected naps, etc. It also helps us track over-the-counter pain meds and anything else worth noting. If you do this each day, it makes the symptom calendar much easier to make.
At UNC there is a program for Pediatric Complex Care that may help you manage all the follow-up appointments and all the different specialists you may need to see and follow up with after you’ve been discharged.
Tips
If you are headed to the hospital with a young child or a child with autism or developmental delays, Pedi-Wraps can really help. There is nothing better (that we have found) at stopping your child from pulling on the EEG wires and hat. These "NO-NOs," as we call them, are miracle objects. They keep Oliver from bending his arms and ripping off his EEG. We got these at UNC and have used them during every single EEG since. They have been enormously helpful. There are also large “mittens” that look like boxing gloves (see photo) that can keep your child’s hands limited. These are sometimes considered “restraints” and may require a supervisor to sign off on. Do not back down from advocating for your child. When it comes to EEGs, they are so much trouble and work, but they give invaluable data you need to care for your child, so any tools to make the tests easier are worth it. As you can see in our photo the main reason we had a mitten on Ollie at that time was his IV and trying to keep him from pulling that out, which is also something you don’t want to have to re-do.
It is likely your brain will feel fuzzy while in the hospital — this is normal. Write down your questions for your child’s care team. As recommended on The Inspiration Lab Podcast, don’t do a deep dive of questions during the daily “rounds” IF (and only if) the doctor is willing to come back later and talk more in depth. The medical team has to go to all the rooms and that can limit the time they spend with you. In complicated scenarios, it’s totally appropriate to see if they can swing back by before they leave.
When you’re being admitted to the hospital, it sometimes takes a great deal longer than you’d expect. The rooms sometimes just aren't ready. It can take hours, so be prepared to wait. Bring food, diapers, toys — oh… and your patience. 😊 The same thing can happen when it comes to being discharged. That can take longer than you think and you’re just sitting in the room ready to bust out of there. Be prepared going in by knowing that being admitted and being discharged are lengthy processes for the nurses and staff, and be flexible with your expectations.
Have a friend who can coordinate meals and/or info to keep loved ones updated. When Ollie was in the hospital so, so long we came home to banners, wine, food, gifts, plants, flowers, notes of encouragement and a clean house. My wonderful friends all worked together to make it as easy as possible for us to come back. They even packed up my Christmas decorations since we went to the hospital on Christmas Eve and didn’t get back until late January. If you were one of the many people who helped take care of us in those weeks and months, we will always be so grateful for you. You made the hardest season in our life a little easier!
Decide if you want visitors and, if so, how long you’d like them to stay, etc. With COVID-19 precautions, this may not be as much of an issue. It’s totally appropriate to ask people to NOT visit.
Allow people to drop off food and drinks for you — they want to and it does take the edge off a bit to have a really nice cup of coffee or a squishy bagel or a hot meal from a great restaurant.
Take a photo of where you park your car if there is a big parking deck or lot. After days in a hospital, it can be disorienting to try and find your car in a sea of vehicles. Also, at larger hospitals, daily parking fees can be super-high. Consider trying to move your car to the Ronald McDonald House parking lot if needed.
If you’re having a particularly long stay and/or other family members need housing, look into the Ronald McDonald House and similar organizations, which can be a godsend during extended hospitalizations.
Order food when they tell you to do so and remember not all hospitals include a complimentary food tray for the parents, so that is why your snack stash is so important.
If your doctor will allow you to record them, I think Otter.ai is the best app ever for this. After you record, it creates a searchable PDF and is a great tool when you’re trying to take in a deluge of new information and medical terminology.
If you need medical supplies when you go home, try and research the supply companies you could use versus just going with the default hospital provider. Know you can always change your supplier up if medical supplies become a big part of your life (they are with us and we love our medical supply company).
Your pediatrician is going to be your primary point of contact post-hospital, so if you don’t have a great one, then it may be time to transition to a practice that is better equipped at serving kids with significant or ongoing medical issues. We LOVE our current pediatrician, but we had to leave our original practice in town in order to find the right fit.
If you’re being discharged and you feel like different specialists have given you advice or instructions that is totally contradictory, then speak up. The more specialists you see, the more this is likely to happen, and they need to sort this out themselves so you have clear priorities and directions upon discharge.
