Going home
The intestinal rehabilitation and transplantation team, including the bedside nurses, will help to facilitate your transition home. In a short time, your child should begin to participate in developmental, social, educational, and recreational activities that are appropriate for her age group. Taking your child home is exciting, but can also be very overwhelming. You will be ready to leave the hospital when you are able to do the following:
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Demonstrate appropriate knowledge, measurement and administration of all medications, including TPN.
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Understand how to mix and administer your child's feedings using the gastrostomy tube.
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Perform care of the ileostomy, gastrostomy tube, and central line. More here on the care of the gastrostomy tube at home.
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Demonstrate how to measure and calculate stool replacements.
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Verbalize signs and symptoms of infection, rejection and when to call the transplant team.
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Complete CPR class.
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Successfully complete 24-hours of independent care at the hospital.
Follow-up care
Your child will need to follow-up with the transplant team frequently for the first one to two months after transplant. As you feel more comfortable caring for your child at home and she is stable, clinic appointments will be less frequent.
While you may visit the transplant team regularly, it is also important to follow up with your pediatrician to monitor your child's growth and development, get immunizations and help with any problems not related to her intestine (for example, an ear infection). It is important that your pediatrician is aware of your child's intestinal disorder and what medications she is taking. A summary letter is sent to your pediatrician after discharge from the hospital and after each clinic visit. Please remember to contact the transplant team before your child begins any new medications to ensure they are safe to be taken with your child's immunosuppressive therapy.
Your child should be evaluated in order to continue receiving weekly physical and occupational therapies at home. If your child is not enrolled in the Early Intervention Program, please notify the transplant team or case manager to ensure that your child receives these services.
When to call the transplant team
Call the transplant team if your child exhibits the following:
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A fever of 100.5° F or greater
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Increased stool output
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Any signs of bleeding
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Any changes in
stoma color
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Difficulties with the central line
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Problems with the nasogastric or gastrostomy tube
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Signs or symptoms of
dehydration (for example, decreased urine output, cracked lips, dry tongue, and/or no tears)
It is very important to report any changes in your child's condition to the transplant team. The team will let you know which symptoms are important and need further treatment. During weekdays (8:30 a.m. - 5:30 p.m.), the intestinal rehabilitation and transplantation nurses should be contacted at 773.880.4372 (Jessica Zimont) or 773.883.6171 (Amy Bouvy). During the night and on weekends, parents should call 773.880.4000 and ask for the attending gastroenterologist on call.