Taking Care of David:
A Parent's Guide to Surviving a Hospital Stay

by Jean Bender

As the parent of a 21-year-old with multiple diagnoses, I have had the opportunity to stay with my son for several hospitalizations over the years. Here's my advice to you:

1. Bring your child's medical information. Depending on the hospital's relationship with your child's primary clinic, it may not have access to your child's information. I have a portfolio that I bring with the most current reports from my son's specialists, his lists of medications and their side effects, a contact list (or business cards) of all of the specialists involved in my son's care, and any other relevant information. I don't always know before a hospitalization what may need to occur: he may go in for one reason and another issue may arise.

For example, David needs to be sedated for any procedure that requires him to remain still, and before that can happen, the anesthesiologist needs to know the current status of his respiratory situation (pulmonologist's and sleep specialist's reports) and his vertebrae instability (orthopedist's report).

2. Bring your child's comfort items. David has an anxiety disorder, but even children with no formal diagnosis can be anxious at being in the hospital. We make sure we don't go for a planned hospital stay without some of David's favorite music, videos and a few toys. Also, David doesn't understand why we want him to wear pajamas in the daytime so we bring his own comfortable clothing (sweats and loose shirts). If you do this, make sure you bring extra to change frequently enough to satisfy hospital cleanliness rules.

3. Inform, Repeat, Insist (or Refuse). Tell hospital staff what you think they need to know about your child. If the first person doesn't seem to note the information, repeat it to someone else. If nobody takes notice but you think it's important, insist on discussing the issue. You are in charge of your child's care, and you do not have to give consent for procedures if your concerns are not addressed. You want to be a partner in your child's care so you need to consider how critical the concern is before you refuse

treatment for your child, but you need to know it's an option.

For example: when my son was having seizures, the neurologist wanted to sedate him and record brain wave activity; but when he understood my son's respiratory situation (see #1), he decided not to authorize the procedure until he could speak with the specialists.

A less critical example: David does not tolerate IVs, masks, tape, monitors, or other medical equipment inserted or attached to his body. When I tell the medical personnel, they usually smile and assure me that they understand; but when I tell about the time he pulled out his tubes with his toes, they take precautions.

4. Ask for what your child needs. By now, you understand that David isn't the easiest patient. I've found that you don't necessarily get a "menu" of services that might be available to help your child adjust. Here are just some of the services/treatments that have made our hospital stays a little easier:

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Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man.

~Benjamin Franklin

An optimist stays up until midnight to see the new year in. A pessimist stays up to make sure the old year leaves.

~Bill Vaughan

Hospital Specialists Help Siblings Cope, continued from p. 2

stress levels than those not offered the education. Overall, however, their stress levels were still higher than average.

If the sibling understands why his or her parents are spending so much time at the hospital, “they are less likely to act out to get attention,” said Shari Wade, a pediatric psychologist at Cincinnati Children’s Hospital Medical Center. “So in that sense, the patient can be helped indirectly. If families are coping more effectively, it is going to be better for the patient in the long run.”

Wade recounted an interview with the siblings of a 14-year-old girl who had suffered suffered an aneurysm. They told her: “We can handle the information. If you don’t tell us, we are going to imagine things that aren’t true.”

Bruce, the child life specialist at Vanderbilt, said her efforts to help patients and families cope sometimes go beyond providing medical information. She recalled a cancer patient whose favorite playtime included a good game of dress-up with her sister. “Once the patient got sick she had a bone marrow transplant and was in isolation. The sibling was unable to visit and then was afraid to visit,” Bruce said. The healthy girl feared she would make her sister sick. When the visit finally was arranged, hospital workers were determined it would be fun — not awkward, grim or painful. “We brought in a chest of dress-up clothes and make-up and lipstick,” Bruce recalls. “The sibling nervously walked in.” The girls glanced at each other, and then they “immediately dug into the dress-up material. That was it. They needed to meet each other on familiar ground.” It reconnected the girls. “And it was uplifting to the parents to watch their two girls play together again,” Bruce said.

For more information go to: www.cfah.org/