Roaming Resources

When told of Katie’s diagnosis, her parent’s immediately wanted more information. They wanted to know as much as possible about HLHS, so that they could feel as educated and prepared to deal with what was to come. They were Katie’s advocates and they needed to have the most accurate information to help her in the best way that they could. Fortunately, both of them had laptops that they could bring with them to the hospital and use for research. The cardiology team was wonderful in giving suggestions of appropriate websites that contained accurate information. The times that Katie’s parents felt most able to support their daughter were the times when they felt that we had the useful information to fuel their learning.

They were fortunate that they asked lots of questions before researching and had the resources to use while in the hospital. Unfortunately, many families do not have the same resources that they had. One of the last things that they were willing to do was to leave Katie’s bedside to look up information on a computer. The roaming resource program provides the pediatric ICU with laptops that can be used in the patient’s rooms. These laptops contain preloaded websites and information regarding a variety of conditions. The simple goal is to help remove the anxiety, simplify the research, and improve the quality of learning for families about their child’s condition, ultimately improving the advocacy that parents can provide for their child.