Kids with Cystic Fibrosis: Making Hospital Stays Better Experiences

Hospitalizations. Scary, not fun, and full of strangers doing painful things to you.

Typically, most kids get through childhood having spent only a couple of nights in a hospital. Perhaps they had their tonsils out and stayed overnight for observation, or maybe had the flu and needed fluids and monitoring for a few days. It’s probably something they (and their parents) will remember for many years and even decades later, because it was likely a singly traumatic or painful experience.

If you have a child with Cystic Fibrosis, you might have to bring him or her to the hospital much more frequently – perhaps for a “tune up” – a two-week course of IV antibiotics, several times a year. Even if they’re “lucky” enough to only have to come in “only” once a year, it’s still a long period of time to have to endure all that comes with being a patient.

Wouldn’t it be great if your child could look back on a 2-week stay and remember it through a different lens?


Not as the place with scary, unfamiliar surroundings, but as a place with love and smiles! Not a period of time when only bad things happened, but a time when others visited and spent time with your child, they got to do some fun things, and received lots of support?

I’ve come up with some ideas to make those long hospitalizations less traumatic, and possibly fun! You’ll read about ways to empower your child to “own their space”, to distract them from their symptoms, tests, and treatments, and understand that they are not the only kids who have to be in the hospital for long periods of time.

1. Make it familiar!

  • Bring their pillow and favorite throw blanket. Comforts from home can make things a little less strange! (Wash them fresh right before bringing them in so they are nice and fresh, then wash them as soon as you get home – all sorts of germs linger in the hospital.)
  • Bring a couple of small items that remind them of home – a framed photo of their beloved kitty or dog, a nightlight or music box (nothing that cannot be replaced!!), or a jar of snacks from home to nibble on!

2. Bring a friend!

I think that just about every child has a favorite stuffed animal. Yes, even the older kids! I even know of adults who enjoy stuffed animals to the hospital. If you’re not convinced, let me share this story.

douglas

Pillow, hug buddy, arm rest (for arm with IV or PICC line), something from home…

Meet Douglas. He’s the second stuffed dog who’s served as my “sick buddy” in my lifetime.

During one hospitalization, the floor’s Nurse Manager noticed him. He was upside down on my hospital bed, and I had rested my arm (that contained my PICC line) across his belly. I explained to her that his shape and squishiness serves as a great cushion/pillow for my arm when I have a PICC line or IV in a weird place. He makes a great brace for coughing or belly pain. He also keeps me company, and, like one would do with a real pet, someone to hug when I’m in pain or uncomfortable or can’t sleep.

The Nurse Manager was so impressed with Douglas that she bought a bunch of similar stuffed animals for patients on her floor. Now, Douglas is well-known on the Pulmonary floor. Some nurses even remember me not for my medical situation, but because they’ve “met” Douglas!

She also passes out “sign me” bears to patients – so much fun to collect signatures from staff members!

IMG_0183

Yes, this is me, and yes this is my bear!! The Nurse Manager gave me this autograph bear for nurses and other staff members to write on as a momento of the awesome care they’ve given me.

3. Decorate the room! This is a fun idea that also can keep kids busy. (As always, ask your nurse what’s allowed!)

  • Pack some coloring books, blank white paper, crayons or markers, scissors and scotch tape.
  • Go to a bookstore or dollar store for cheap photo books (with a common theme) that you don’t mind cutting up.
  • Choose a theme for the hospitalization, such as upcoming holidays or seasons, the zoo, the ocean, etc.
    • Have the child color or create pictures and tape them to the walls, either as a Gallery, or as part of an overall scene.
    • Take photos from the photo book(s) and tape them to the walls.
    • Have visitors contribute to the cause by coloring/drawing something and adding it to the collection. It’s also a bonding moment between patient and visitors.
    • Ask staff members if they’d like to contribute! I know that there isn’t a lot of “free time” for staff members to sit and color, but maybe they might bring a page home – adult coloring is becoming more and more popular, so they might find it relaxing to color something at home and bring it in during their next shift!
    • After the hospitalization is over, scan the colored/drawn pictures or just use the actual pages, and make them into a book. This helps turn what is usually a negative experience into a more positive memory.
      – Staple the pages on the left border
      – Use a hole-punch in the upper left-hand corner and tie the pages together with ribbon
      – Slide pictures into clear binder pages and put into a binder (acts like a photo album
      – Bring pages to Kinko’s and have it bound into a little flip book

4. Take selfies/short videos!

  • Make hats, masks, and accessories from construction paper and glue, and have the child, visitors and staff take selfies!
  • Have visitors record short videos with your child of them singing, making funny faces, etc.
  • Ask family and friends who cannot visit to make and send you videos offering encouragement, telling a joke, or capturing fun or special moments (if you have pets, try to get some videos of them doing tricks or playing).
  • You can also create a Facebook album, Caringpage (or similar type of support site), a blog, or private Youtube account to store the videos. Share videos with your child daily, perhaps during unpleasant events like getting blood taken, doing un-fun treatments, or times when they have to rest/stay in bed.
  • At the end of the hospitalization, make a video using photos an upbeat or favorite song. Again, this can help the child “look back” upon the hospitalization with a different perspective…perhaps through Pink-tinted glasses (I had to throw that in there, because of my blog name!).

5. Own the room!

If your child is in a private room, or their bed is on the window side, ask your nurse if you can rearrange parts of the room. I like to move my bed to the window (making sure my PICC line or IV arm is accessible from the “outer” side) and create a more casual area that doesn’t look so austere and sterile. This also helps “open up” an otherwise smaller room.

Check out my room tour video to see how I moved things around (scroll to around 1:08 to see where I had moved by bed).


6. Ask/borrow a small fridge for snacks!
 (Get permission first!)

Many of us with CF need extra calories, and sometimes even need to nibble overnight, should they need something to tide them over until morning (ALWAYS CHECK WITH YOUR DOCTOR FIRST!). In fact, my hospital now puts a mini fridge in CF patient’s rooms on the Pulmonary floor.

Stuff to bring:

  • Fruit/veggies – I love Cuties/Halos, and they are even better when cold. Carrot sticks are always fun, especially with dressing or dip.
  • Gatorade, Iced Tea, Juice – I keep a few bottles in my mini fridge that I sip on all day, and it not only adds fluids, but also those extra calories without having to work at eating more.
  • Milk!  (You might also bring cereal, a bowl, and a spoon. What kid doesn’t like cereal?)
  • Store leftover or extra food from food services/cafeteria. My hospital allows CF patients unlimited meals and snacks, so I sometimes order some extra food to keep for nighttime munchies or while waiting for my meals to get delivered to my room.

7. Have a Party!

  • Ask nurse(s) first for rules/policies about # of visitors at a time, what kind of food the child can eat, and perhaps suggest a good 2-hour period when the child isn’t “due” for something like a Vest or neb treatment, or tests.
  • Invite family/friends who would like to show up in 30 minute increments (more than 2-3 people at a time might be too much excitement, so stagger visits over a 2-hour period).
  • Go to a party store and get a few decorations that you can put up in a theme – luau, Xmas in July, Halloween, graduation (ask your nurse what you can bring and where you can put it).
  • Get some of those “mini games” for people to play with your child.
  • Have a type of “pin the tail on the donkey” game.  Take an 11 x 17 piece of paper and draw the shape of a person, the draw and cut out a shape to “pin on” – maybe a “flu shot” (haha! Joey pinned the flu shot to its butt!), or nebulizer mask (haha, arms can’t breathe!).
  • Food – Order food (pizza, appetizers) from a nearby restaurant. Many will deliver to the hospital lobby.
  • Have visitors bring something “homemade” – you’ve got a mini potluck!

8. Raise Morale on the Wing/Floor!

Is your child on a wing where other kids are there for a while? When parents come together, you can pool resources to do something fun that provides distraction, creates a positive memory for a bunch of kids at once, and raises morale.

Fun Ideas

  • Ice Cream Sundaes! At my old hospital, we had Ice Cream Friday. The ice cream lady brings a cart full of ice cream and fixins. She stands in the doorway and asks what you want on your sundae. She makes it, then passes it to someone in the room to pass to the patient (so that no cross-contamination occurs). *If there are dietary restrictions, have some alternatives available (lactose-free ice cream or fruit-juice popsicles, etc.)
  • A popcorn machine is even easier, because the person rolling the machine only has to serve one kind of thing.
  • Have a Service Dog visit! Ask your nurse about Service animal visits. However, if your child is on contact protocols because of bugs like MRSA, they usually will not be allowed to participate. So ask before you bring it up to your child.

NOTE: Make sure to have some treat options for kids who are NPO (nothing by mouth, if they have to have a special test or procedure that they have to fast for) and are not able to partake of food treats. For example, a deck of cards, mental brainteaser puzzles, a small toy, etc.

9. Make every evening a MOVIE NIGHT!

In every hospital I have stayed in, there were 2 channels that showed movies. Somewhere in the hospital or on the floor, someone puts in a DVD. Find out if you can bring movies to show on those special channels, and have your nurses tell all of the patients the time, on what channel, to tune in. Most hospitals ask visitors to leave at 7pm, so it’s a perfect time for kids to wind down and relax, even if there are treatments scheduled during that time.

Make a note/flyer and tape or slide it under the room doors: “THURSDAY NIGHT WITH ELSA AND ANNA! FROZEN, Channel 56, 7pm!” Ask if the front desk can also announce the movie at an hour prior, and again at 5 minutes beforehand.

10. Have an in-your-own-room slumber party! Plenty of inpatient kids cannot be around others, whether for CF cross-contamination rules, or because they carry a bug like MRSA (which has all sorts of contact precautions), so having each kid in their own room evens out the playing field. Coordinate with the floor’s child-life worker.

  • Schedule it for 5:30-7pm.
  • Take “orders” and preferences or special dietary needs, the day before.
  • Order a bunch of food (pizza, wings, appetizers) to be delivered (many places will just meet you in the lobby), have parents sign up to bring different snacks, and have an official “delivery team” bring food to each room.
  • Have kids play Charades or Pictionary with the patient from across the hall, through their room doorways.
  • Photocopy a coloring page (something related to holidays or seasons, or something hospital-related like a doctor, or a band-aid with a crazy design), and have each child color it. Then ask your nurses to hang them in a special place on the wall somewhere on the floor. Make a huge deal about it when walking in the hallways or being wheeled to get a test taken, and show your child’s visitors!
  • Have someone make balloon animals, door-to-door.
  • Have the party wind down with an evening movie (see #9)!

I hope that some of these ideas help make your child’s longer hospital stays a bit more bearable and even downright fun,  and create more positive memories of an otherwise unpleasant experience.

If any of these have worked for your child, let me know in the comments!

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