Short Gut Syndrome Patient, Family & Professional Support Groups

Tips for Managing Hospital Stays

by Janet Tate, LCSW

sick bearTaking care of a new baby with unexpected medical needs can be so disheartening. Families with a child with short gut issues may never leave the hospital for weeks, even months. Once they do go home they often become "frequent flyers," returning over and over again to the hospital with line infections and bowel blockages. This "frequent flyer status" has a big impact on families. There are so many hospitalizations, and any one of them can throw a family for a loop! Here are a few suggestions to make this time easier for your family. These thoughts may trigger a few of your own ideas, too.

1. Build a good support system. Every support system is a little bit different. Some families have close family ties with extended family, are involved in community groups such as church groups or PTA, or have neighbors and friends who provide support when needed. Other families live in a brand new area, and family is far away. For them, it is a lot tougher to find the help and support they need. Take some time to think about your support network. Who do you turn to when you have problems? Who do you count on in an emergency? Be aware of individuals who are already supportive. Consider people who you would like to add to your support system. Are there people in your life who share your same attitudes and beliefs? Are you involved in any church or service groups? Do you have relationships at work? Get to know these individuals, and you will likely add a new person to your support system. Community agencies can provide help and information, too. Early Intervention is a good example of a support for families. Shortgut Support online is a convenient way to compare notes with other parents. A support system is a good resource which helps people to deal with the roller coaster ride of life. People with strong support systems have less stress and are less likely to become ill themselves.

2. Ask for help. It is okay to need help and to ask for it. Most often people find it difficult to ask for help. "It's too embarrassing," they say, or "I should be able to handle things myself." When you think about someone you care about, would it be difficult for you to help them in a time of need? That is what friends and family commonly do. It is easiest for them to help, if you reach out. Let them know what is needed. Lengthy hospital stays require assistance for tending your other children, and it requires planning how you will balance needs at home and in the hospital. Parents do not have to be at the hospital non-stop. Hospital staff can provide help when you take time for other demands in your life. The nurse, the patient care technician, or Kid's Crew can spend time with your child. This gives you time at home or work. Know where you can turn for help and put help that is offered to good use. Live in gratitude's abundance.

3. Plan for your family. Many families have other children at home to care for during a hospitalization. There are some things you can do to make hospitalizations easier for your children at home. Develop a routine for your other children at home. I often recommend that your other children have a good bedtime and breakfast routine. Create a schedule that works for you and for each member of the family. Having a routine and an emergency plan can give you and your family needed peace of mind.

4. Take care of yourself. Finally, it is important for you to take care of yourself. In addition to emotional support, don't forget that you need sleep! Some parents with chronically ill children learn that they need to leave the hospital and sleep at home--at least part of the time. They may trade off with their husband or a grandparent. Many let the nurses take over in their absence. Plan to have good nourishing meals along with a sleep schedule. Otherwise, the stress can become overwhelming. Having a child in the hospital is a big challenge. Be sure to take care of you, so that you can provide care for them. Take breaks! Make a lunch date with a family member or a friend. Exercise helps with stress, too. With a letter from the Parent Resource Center, a parent can use the exercise facility at the Jewish Community Center. Hospital social workers are available to help you consider ways to problem solve and take care of your needs. Do whatever works best for you.

This website is created by families for families. This site does not provide medical or any other health advice, diagnosis, and/or treatment. This site and its services, including the information above, are for informational purposes only and are not a substitute for professional medical or health advice, examination, diagnosis, and treatment. Always seek the advice of your physician or other health care provider before starting any new treatment, making any changes to existing treatment, or altering in any way your or your child's current care or diet regimen. Do not delay seeking or disregard medical advice based on the information on this site. Some of the information on this site may be incorrect or out of date. No health information on this site is regulated or evaluated by the Food and Drug Administration and therefore the information should not be used to diagnose, treat, cure, or prevent any disease without the supervision of a medical professional.