Making the most of being inpatient and resources to make the most of your stay

Contributing Authors:

Amanda Mikuls, Children's Mercy Mom

As a mom, the last thing you want to hear your child’s doctor say is “I think you should be admitted to the hospital.” My 13-year-old son is generally a healthy boy, but he does have a medical diagnosis that has us visiting Children’s Mercy Kansas City every few months for checkups. So, we’re not unfamiliar with Children’s Mercy or the hospital environment, but this year was our first experience hearing that our son needed to be admitted for treatment.

It was daunting and immediately sent me into a spiral for all the reasons you’d think - will he be OK, how will he feel about this, will he respond to treatments, will insurance cover this, etc. It’s overwhelming. There is nothing I can say/write that will make those words easy to hear. However, I can share our experience as an inpatient and maybe that can take a little edge of the inevitable spiral when you hear those words.

We had 2 hospital stays this year - 1 for a week in January and another for 2 weeks in October. Both experiences were similar, just one longer than the other. Below is my perspective as a parent for those first few days with a child in the hospital.

Day 1

It’s a whirlwind as you get settled - getting a room, ID/security bracelets (and how to use them as parents), learning how to order food, meeting your care team, understanding all the support available to you, figuring out how to use the TV, etc.

Hot Tip

If you have a tall kid (5’6” +), ask for a bed extender! That was a game changer for my son.

Day 2

Things are hopping pretty early (by teenage boy standards) at the hospital. The nurse shift change happens at 7 a.m., and then morning rounds to meet with all providers on your child’s care team can keep you busy for a bit. It felt like a lot of information was coming at us in the morning. Not in a bad way - information was always clear and questions were always answered. It’s just a lot. The afternoons were a little quieter and allowed for some rest. Or for those kiddos that don’t like to rest, there are plenty of activities (with or without screens) to keep them busy!

Hot Tip

Keep a notebook in the room to take notes so you don’t forget when you’re relaying information to your partner/spouse that may not be in the room during those conversations. This was incredibly helpful for us to ensure communication was thorough.

Hot Tip

Communicate with your care team - all of them. Be very clear about your goals, raise concerns, ask questions. Advocate for your child and for yourself. Say what you need/want and work through those things with the care team. They can’t read your minds, so be completely transparent for them.

Day 3

For both hospital stays we had this year, day 3 is when we started to feel in control of the situation. We had a better sense of what to expect, we felt good about the treatment plan and goals in place, we were comfortable in our routine and we had found our favorite spots to eat in the hospital. Children’s Mercy truly does everything they can to make the best of the hospital experience for all kiddos - weekly bingo/trivia with prizes, games, activities, therapy dogs and school teachers.

Hot Tip

Bring some comforts of home to the hospital. We brought in blankets from home for our son and for ourselves! And comfy socks or slippers. And packing a few of your favorite snacks is a great idea as well.

Day 4

At this point, we were tired, restless and just generally over it. We craved a change of scenery, fresh air, more privacy, our own beds, family dinner at home.

Hot Tip

Volunteers come by often to help. Let them! After a couple of days, I’d had my fill of Uno, so I let a volunteer step in and it was nice to let my son beat someone else for a change.

Hot Tip

Take care of yourself. Volunteers are also available to sit with your child so you can get a meal outside of the room, take a nap, call a friend or just take a walk outside. These breaks may be brief, but they go a long way in keeping your spirits up so you can be your best self for your kiddo.

Hot Tip

If it’s safe for siblings, try bringing them in for a family dinner and game night in the hospital.

In our experience, after day 4 there are moments of good and moments of frustration (like day 4), but just know there are a ton of resources available to help. You just need to speak up!

Below are a few more hot tips you may find helpful.

If you have other kiddos at home, it can make being inpatient a logistical challenge. Communication with your partner/spouse is essential to making this work. Dedicate time to connecting daily to ensure you’re both up to speed on what’s happening inside and outside of the hospital and supporting each other.

Accept help. Whether you ask for it or it is offered to you, do not feel guilty accepting help. I found that many people didn’t know how to help, so telling them what you need is ideal. For example, “Could you please come sit with my child for a couple hours so I can visit my other child at school for lunch?”

Communicate with your child’s teacher(s). We found our school to be incredibly supportive and flexible, especially during our 2-week hospital stay. They gave him plenty of time to make up his schoolwork and provided support when he returned to school to ensure he was caught up. And Children’s Mercy has school teachers available to help as well!

Here is a list of other available resources and “hacks” from other families that can make your time at the hospital more comfortable:

Ask your nurses for laundry resources and bring a cheap pop-up hamper for dirty clothes.

Keep a “go bag” of essentials easily available and accessible.

For older patients, consider a sleep mask or ear plugs for those early morning rounds.

Pack a long phone charger in case the outlet is far from your sitting or sleeping area.

It’s important to make sure you remember to eat, so you can stay healthy and strong for your child. The Adele Hall location has a café and market on the ground floor, as well as a café in the Research Institute (with a great view of the city!). There is also a Subway and Roasterie coffee available. If you prefer to stay in your room, parents and guests can order guest trays from the room service menu for $5.

Be sure to take care of YOU. Here are some resources Children’s Mercy offers to parents and caregivers:

- There is a parent exercise room on the ground floor of Adele Hall. You can get the code from the Kreamer Resource Center.

- If your child is in the neonatal, pediatric or cardiac ICU, ask about the Ronald McDonald House located inside the hospital. This service offers 24 hour-a-day, 7-day-a-week access for families.