This past November, we spent six days in the Epilepsy Monitoring Unit (EMU) over Thanksgiving exploring our son’s new epilepsy diagnosis and trialing a treatment. Here I share how we survived our six day inpatient stay in the EMU at Johns Hopkins. Though really, this could be useful for any parent facing a hospital stay anywhere with their child.
I will cover:
How to make it easier for your child
Ways to make it better for YOU
Things to keep in mind
Loving and supporting others who may have to go through this
Things to make it easier for your child
Before your stay, review this social story supplied by the EMU Child Life Specialist: Pediatric Epilepsy Monitoring Unit Guidebook_FINAL It even made me feel better because it was incredibly helpful to see all of the areas of check-in so we knew where we were going.
In our particular situation, Mark had to wear an EEG cap for six days straight. For a child with sensory issues with things touching his face and head, I knew we needed to try to improve the situation. Enter the Nilly Noggin! An epilepsy mama developed a cap made from stretchy t-shirt material that completely covers the EEG gauze cap and encases the messy set of colorful wires that gather in the back. The bottom unzips for easy box/wire placement and then zips back up to contain everything. It’s also very easy to remove for the inevitable lead replacement.
Backpack for the EEG box
The next game-changing item was a pre-k size backpack with a chest strap. Typically the child must carry around a small fanny pack type bag that contains the box and is attached to a giant cord tied to the wall. There was no way Mark would do this while holding his precious hand counter and iPad. The only slight snafu with this arrangement is that the backpack tends to overheat so as long as the backpack stays unzipped and can breathe, you’re golden.
Also, ask the tech to unwind the cord each day so you don’t end up with a cord that only stretches a foot from the bed.
Navigating the IV & hospital bracelet
Having an IV was also part of our equation, so I needed to find a way to prevent him ripping it out. I purchased a wrist guard that would cover the IV, but you know what? It turned out that buttoning his flannel shirt sleeve was all that was needed to put it out of sight. However, for the child who may be more vigilant, a wrist guard or “no-no” wrap provided by the hospital may be useful. As a side note, the IV placement was a lot easier than I anticipated because they used an portable ultrasound machine to find the best vein.
Since Mark is used to wearing a locator on his ankle, we asked to put his hospital band on his ankle as well. This alleviated the chances of prying and pulling at a bracelet.
– Favorite DVDs (Mamma Mia & Mamma Mia Here We Go Again, of course)
– New books
– Old books (favorites that he hasn’t read in a while and was delighted to see again)
– Family photo books
– A present to unwrap
– 3 iPads (yep, 3!) and rapid chargers
You could wrap small presents to give after each medical procedure as a prize. Mark recovers fairly quickly after unpleasant procedures so I didn’t bring a lot but I did bring a wrapped Christmas gift that he was able to unwrap on Thanksgiving day.
Mark’s favorite way to spend his leisure time is with his iPad, so we brought more than one so that we could always have a spare when they were charging.
A note about devices. You can’t charge a device near an EEG monitor, so you’ll need to get creative and make sure you are charging things away from your child and never while they are holding the device. You will be on the receiving end of a very angry EEG tech if you do not heed the warning. We know from personal experience.
Bring a surge protector if you have a lot of devices that need to charge. Also, there’s an iPad and charger located on the wall, should you need them.
A battery-powered sound machine. To drown out typical hospital noise and create a similar sleep environment, we brought ours and listened to the rain each night.
It was suggested to me to bring a lamp from home to make the room feel homier. I totally would have done that because I despise fluorescent lighting but Ike drew the line at dragging a lamp with us.
Flannels & athletic pants
The hospital has gowns but we chose button-down soft flannels and athletic pants. I would also recommend socks with grippy bottoms. Mark hates socks so he went barefoot the entire time, which is something I’m going to try not to think about.
Lots of snacks
A box filled with his preferred foods and snacks. There’s a fridge, microwave, and toaster on the unit, but not in the room so label foods to place in the fridge. We rotated fun snacks so he wouldn’t burn out on one bag of something.
Don’t bring a lot of toys
What I did not bring was a ton of toys. Johns Hopkins has Child Life staff, which are basically angels on earth whose entire job is to entertain your child and help make their stay and experience smoother. They can provide games, toys, crafts, movies, books, etc. to help pass the time. They even did a hospital wide Bingo game that we watched on TV, and we won a sloth and Star Wars figurine!
Things to make it easier for YOU
Aniticpation of the sleeping situation was the most stressful part for me.
Here’s the room set up:
– There’s the bed the patient sleeps in, which is by far the most comfortable sleeping surface.
– The chair that reclines
– A sofa that folds out to the size of a twin bed
Dealing with the “bed”
Have you ever wondered what it would feel like to sleep on a gym mat? Wonder no more. “Bed” is a relative term for what the couch turns into when you pull the cushion forward to fashion it into a sleeping surface. I would suggest bringing some type of cushiony surface, like a camping mat, or egg carton mattress topper. With that said, it was actually more comfortable than I anticipated.
I also brought my Migraine Stick, which is sheer magic as it worked so well to release the tension in my neck, head and shoulders that occurred as a result of looking down at my phone and laptop so much.
Pillow & Blankets
Bring your own pillow from home. This is a total no-brainer but if you, for a second, think you can wing it with the hospital pillows, let me remind you, they are not a suitable substitute. Drag your pillow like you’re going to a sleepover. While we’re at it, bring a good blanket for both you and your kiddo. Again, hospital linens leave much to be desired.
Saline spray, travel humidifier and a travel kettle – my favorite!
We all know hospital air is dry. Bring chapstick, lotion, saline nasal spray (this is my favorite), and hydrate. But something else you should bring is a USB travel humidifier. Avoid the nosebleed, and put some moisture back in the air.
Speaking of hydrating, if you are someone who appreciates a hot beverage, bring a travel kettle. I purchased this lovely contraption and it was the best. Plugged it in, and within a few minutes, I had hot water for tea whenever I wanted, without having to wander to the family room or cafeteria and pay $0.50 for a cup of hot water. Sitting in the hospital is boring, but add a cup of tea and it’s not so bad.
We mainly ate take-out the entire time we there, including meals from Balducci’s located in the Zayed Tower and Subway located on the main floor of the hospital. A friend recently did a stint in the EMU and said the hospital food was awful. Since we brought in so much of our own food, we never ventured to try it but if you want to, there’s a binder in the room with directions that let you know how you can order a parent tray to accompany the child tray for a small fee.
– Sale flyers and ads I never have time to take advantage of
– My blank Christmas card envelopes and my address book
– Laptop, charger, and headphones
– A word puzzle for moments when I don’t want to be productive
– Words of encouragement for when I’m feeling like I can’t do this
– Snacks that can double as meals when leaving the room is not possible (Epic Bison Bars, Pumpkin Seed Bars, and Oatmeal cups (made with the hot water from my electric kettle))
Help if you need a break
Speaking of leaving the room, the nurse will stay with your child if you need to leave them unattended, you just need to coordinate the time you wish to leave at the start of their shift so they can plan.
While we’re talking about leaving, if you are tag-teaming the hospital stay and either you need a break or only one person can stay, ask for a referral to the local Ronald McDonald House. I asked one of the social workers at Kennedy Krieger Institute for the referral and within a few days I received a call that let me know they had a room available for us, and if they didn’t they would have reserved a hotel room. So no need to fork over cash on a hotel room or Airbnb, check with RMH first. We both ended up staying in the room for Mark. Ike slept in the chair and I on the gym mat. It worked well for allowing each of us breaks from the room whenever we needed them. It also allowed me a chance to escape to meet a friend for coffee whose daughter as in the tower next door.
These are my favorite Holding an uncooperative patient steady is a whole lot easier and safer when you’re not slipping in your socks. Get thick socks with treads. The same goes for your kiddo. Sadly, our Mighty boy finds socks repulsive.
Dress in layers
I had read about how chilly and artic the hospital rooms were so I brought many things to keep me warm but during the day when the sun beats in the window, it was hot and I was thankful to be able to strip down to my t-shirt.
Bring a sleep mask if you want to try to grab a nap on the gym mat couch during the day. It’s bright blazing sun from sunrise to sunset and the window shade only dips down so far.
How to clean up
Dry shampoo, baby wipes, and every other camping bath accessory are helpful but a real shower will make you feel more like a person. Don your flip-flops, pack your travel shampoo and wash your hair. You will feel better.
There is a shower in the bathroom within the room that family members may use. There’s no curtain, just a shower in the corner across from the toilet and sink so water tends to go everywhere. I didn’t love this part but I preferred a shower to cleaning up with baby wipes especially since we were there for a week.
Dragging it all in
So how are you going to schlep all of this from the parking garage to the hospital room? A hand truck! This was suggested to me and I thought it would be so handy to have, especially considering it’s also helpful when helping someone move, but Ike was growing weery of the constant flow of Amazon boxes coming into the house and decided to pump on the brakes on this purchase. It took him about five trips to bring everything into the room so I’d say that it would be a wise investment if you are doing this solo.
Other things to keep in mind:
Smile! You’re on camera!
One thing to keep in mind while on the EMU is that you are being recorded and listened to constantly. So if the EEG tech just barged into your room saying “we have a major problem” and yells at you for charging your laptop too close to the patient, just keep in mind, they can see your dirty looks and hear your snide remarks. Perhaps you don’t care, and they likely have heard it all, but this part felt particularly unnerving to me.
When you arrive, purchase a book of stamps in the parking garage so you don’t end up paying $80 for your parking bill like we did. Instead you purchase stamps in sets of 5 for $35 each. Each stamp is good for one exit (24 hour period).
Park on the left side of the garage and take the Children’s Bridge to the Bloomberg tower. This will help if you need make multiple trips to the car. Also, use your accessible parking tag if you have one so you can get as close to the elevators as possible.
Consider a wheelchair or medical stroller for transport. Your child may or may be ambulatory, but if they are, still consider an alternative way to get them to and from the hospital. When we left following two days of high dose valium Mark was very unsteady on feet. Our medical stroller was invaluable as he got used to walking again.
Supporting and loving other who may need to go through this
When faced with an inpatient stay, many people asked us what they could do, and honestly I didn’t know. But I can tell you what a few friends did, and how loved it made us feel.
Friends of ours dropped off bags filled with snacks, socks, games, pens, notebooks, comfort items like chap stick, cleansing wipes, home made treats and many words of encouragement. There were even presents, snacks and treats made for my family who would be staying behind to care for Jillian and Luke.
My girl Jordan wrote a cheeky note and attached it to each item placed in the bag. Get yourself a Jordan, she adds such joy and sparkle to my life.
So if you want to know what you can do, don’t ask, just show up with cookies. No one will ever turn away cookies, at least this girl won’t.
I believe I’ve covered everything we encountered, but if there’s still a stone left unturned, drop me a comment and let me know if you have any questions. Just remember, you won’t live in the hospital forever, you will go home, the glue will come out of their hair, and you’ve got this!