Children need to play, especially when hospitalized. Ask whether the hospital has a recreation therapy department. Often, a large room is devoted to toys, books, dolls, and crafts, and is staffed by specialists who really know how to play with children. These rooms provide many therapeutic activities such as medical play with dolls, which helps children express fears or concerns about what is happening to them. By encouraging contact with other children in similar circumstances, recreation therapy helps children feel less alone, less different from other children.
The recreation therapy rooms are a cheerful change from lying in a hospital bed and are full of fun-filled activities and smiling staff people. If the child is too ill or if her counts are too low to go to the play area, arrangements can be made for a recreational therapist to bring a bundle of toys, games, and books to the room. This can give the parent time to go out to eat or take a walk.
When I wanted to have a conference with the oncologist about Katy's protocol, I called recreation therapy and they sent two wonderful ladies to the clinic. The doctor and I were able to talk privately for an hour, and Katy had a great time making herself a gold crown and decorating her wheelchair with streamers and jewels.
Find out if there are support groups for teens. Visiting restrictions vary from institution to institution, but most are liberal regarding adolescent visitation. You might also try to bend the rules a bit to allow your teen to have friends in as much as possible.
Exercise is important, too. For kids strong enough to walk, exploring the hospital can be fun. Plan a daily excursion to the gift shop or the cafeteria. Go outside and walk the entire perimeter of the hospital if weather and the neighborhood permit. Don't feel limited by an IV pole; it can be pushed or pulled and will feel normal after a while. Many children have been seen standing on the base of the IV pole with a parent pushing them down the hall at a good clip.
Check to see if the hospital has a swimming pool (for you to swim in; your child probably can't use it) or gym. Ask if there is an outdoor playground for patients and parents and make use of it whenever your child feels well enough to go outside. Your child will probably sleep much better at night in the hospital if he can get some daily fresh air and exercise. Also, the physical therapy department may have an exercise program in which you can participate.
In our hospital photos, I have several of a grinning 4-year-old, hooked up to an IV, in a hospital bed, with the head raised waaaaaaayyyy up, as she'd slide down to the bottom. Of course I was doing guard duty at the door, to alert the happy child when a nurse was coming and she needed to "cease this unsafe behavior immediately!" Sometimes you have to make memories while you can, wherever you are.
At Egleston, there was a large metal tricycle with a huge metal basket on the back. I would heplock Kenny, toss him in the back, then we would pedal all over the hospital. There is one part of the hospital called "the tunnel," which connects the children's hospital with Emory Hospital. It is about a mile-long tunnel—all downhill. Man, we would fly—laughing and screaming. Of course, coming back up was pure hell.
Many children and teens feel refreshed by going up on the roof just to feel the wind on their face and have the sun warm their skin. Some hospitals even grant passes to young patients whose white counts are high enough. Be sure to check, before requesting a pass, whether your insurance plan allows this. Over the last several years, third party payers have begun to frown on this practice and may not pay for that day of hospitalization.
Preston left the hospital several times on passes. His IV was capped off and his arm was taped to a board resembling a cast. He attended a birthday party and went Christmas shopping on a pass.
Sometimes you can create your own fun with just a little imagination. On one particular occasion, Matthew was feeling especially bored. With a little ingenuity, we soon discovered that four unused IV poles and as many blankets as we could steal from the linen cart made for one pretty cool tent. We then used the mattress from a roll-away cot, and spent the night "camping" in his hospital room. He had a wonderful time.
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