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The process of recovering from a small bowel transplant is different for each child; your family's need for advice and support from your transplant team will vary in the months and years to come. We hope that the following information will help you gain the basic confidence and knowledge you need to help your child return safely and happily to everyday life.
Preparation for going home starts from the time your child is evaluated for his or her small bowel transplant. This may include occupational and speech therapies to overcome any difficulties your child may have eating and drinking by mouth so that upon transplantation he or she will be ready, willing, and able to meet his or her caloric and nutritional requirements by mouth. The goal of the transplant team is to give you and your child every opportunity to succeed and thrive when you return home after transplant.
Preparation continues when your child is admitted for his or her transplant. Many hours will be spent in arming you with information to help you to care for your child after you leave the hospital. The transplant team wants you to feel comfortable so that the transition for you and your child from hospital to home is a smooth, safe, and enjoyable one.
During the evaluation and throughout the entire transplant process, you will get to know your child's transplant coordinator. Think of your coordinator as a source of information and support for your family.
Before your child leaves the hospital, the clinical nurse specialist and nursing staff, including your coordinator, will provide you with general information that you will need once your child is discharged from the hospital. You will also be given a schedule individualized to meet your child's needs. This schedule will follow your child throughout his or her care. It will be updated each time your child has a follow-up visit (check-up) after being released from the hospital.
It is helpful and important for you to have information about what to expect when your child leaves the hospital so that you will feel confident and comfortable in caring for your child.
Before going home, you will learn about the medicines your child must take each day to prevent rejection of his or her new organ. Arrangements for a supply of medication will be made prior to your child's discharge from the hospital. You will also be given instructions and help in setting up a permanent and reliable pharmacy for refilling your child's prescriptions.
Hospital staff will help you make arrangements for any home health care and services that may be needed when you return home. This may include nursing care, physical therapy, occupational therapy, and speech therapy.
Hospital staff will teach you how to administer your child's medications and monitor his or her blood pressure and heart and lung sounds with a blood pressure cuff and stethoscope.
The staff will also show you how to provide any other care your child may need. For small bowel transplants, this may include care for a Broviac catheter, an ileostomy, and a jejunostomy tube or gastrostomy tube.
The Broviac catheter is an IV line placed in a vein in your child's chest. It is used to give fluids and medicines and to draw labs without the pain of a needle stick.
An ileostomy is needed to give your child's doctor easy access to the GI tract for endoscopies and biopsies. Part of the intestine is passed through an opening in the abdominal wall so that an opening called a stoma is created in the stomach. The endoscope can be easily passed through the opening. Bowel movements also pass through the opening into a bag. The ileostomy is temporary in most cases.
A jejunostomy tube (or J-tube) and a gastrostomy tube (or G-tube) are both used for feeding. The J-tube is placed in the small intestine. The G-tube is placed in the stomach. Both tubes are used to supplement food taken by mouth to meet your child's caloric and nutritional needs. After transplant, eating by mouth is still probably a new experience for your child, so there is the possibility that he or she may need help with eating when he or she leaves the hospital. The J-tube is usually removed within three months after surgery. The G-tube will probably remain in place longer, although some patients do better with a J-tube.
Each of these devices is reversible and may be temporary. The ultimate goal is to remove all of them. Three years post-transplant, a majority of children have all of their appliances removed.
Keep in touch with your child's transplant coordinator. He or she can help you with home care issues, medication questions and refills, as well as address any general questions and concerns you may run into. Your coordinator will provide you with a follow-up routine and continue to be your link to the transplant team, as well as your child's local physician. Don't hesitate to call at any time, for any reason. A transplant coordinator is available 24 hours a day for emergencies.
You will be given instructions and phone numbers to call with questions or for emergencies.
On average, you will stay in the Pittsburgh area for the first four months after discharge from the hospital so your child can be seen regularly as an outpatient at the transplant clinic. Depending on your child's health, this time may vary. Sometimes a child will need to remain in Pittsburgh for six to eight months and occasionally up to one year. The time spent in Pittsburgh close to the clinic will give you and your child time to ease into life after transplant and become comfortable with your new routines.
Frequent clinic visits in the weeks following your child's small bowel transplant allow doctors to monitor the function of the new organ, so they can immediately detect any problems. Clinic is also an opportunity for you to ask any questions that you or your family may have.
At a typical clinic visit, the doctor and the nurse will discuss your child's current health, check you child's weight and blood pressure, and perform a physical examination. They will check for any signs of rejection or infection as well as side effects from medication, and look at your child's incisions to see if they are healing properly. Blood work will be done to monitor your child's blood count and kidney function. If your child is taking certain medications such as tacrolimus or cyclosporine, blood work is also used to measure and monitor the level or amount of medicine in your child's bloodstream.
The doctor may perform an endoscopy to take a biopsy of your child's small bowel. The tiny piece of small bowel taken by the biopsy will tell him or her if there are any signs of rejection and how healthy the organ is.
One of the most important aspects of ensuring the health of your child's transplant is careful maintenance of immunosuppressant medications to avoid rejection and prevent infection. Your child's medication is reviewed at each clinic visit. Although your child will likely take immunosuppressants for the rest of his or her life, the doses and types of medications may be changed by the doctor. It is important to talk to your doctor about any problems or side-effects your child is having; most of these can be treated by adjusting current medications or starting new ones.
If your child's blood results are abnormal, the hospital may phone you to alter the dose of your medications or to arrange for you to be readmitted to the unit for further investigation or treatment.
While your child will need to attend follow-up clinics for the rest of his or her life, visits will become fewer and further apart as he or she gets better. The following timetable can serve as a general guide; your child's follow-up schedule will depend on his or her rate of recovery as well as the distance you have to travel to get to the hospital.
Blood work will be done more often in the first weeks and months following your child's transplant. He or she may have blood drawn two or more times per week in the weeks immediately following. This number will be reduced over time to once or twice a month for labs.
Endoscopy with biopsy will be done more often at first as needed to monitor the health of your child's new organ and to look for any signs of rejection. Time between endoscopies is gradually increased. For the first four to six weeks, endoscopies through your child's ileostomy are usually done twice a week followed by once a week for the next four to six weeks. Thereafter endoscopies are done once a month for the first six months. Once your child is out one year post-transplant and stable, a routine endoscopy with biopsy will be done annually unless there has been a recent episode of illness or rejection.
Follow-up care is a demanding responsibility the first six months after your child's transplant. It is normal to feel frustrated, but there is light at the end of the tunnel. These demands decrease as time goes on as your child's new organ stabilizes, appliances are removed, follow-up visits decrease, oral intake increases, and most importantly as your child's quality of life improves, maybe even being better than he or she has ever experienced before.
You thought the day would never come, but it has! You are on your way home. It is normal if you feel nervous and scared about returning home, especially if you live far from Pittsburgh. The hope is that all of the preparation in the months and weeks before will leave you feeling confident, comfortable and excited about getting into a normal routine for you and your child.
Once you return home, your child will go back to seeing his or her personal physician for routine medical care. The transplant team will continue to manage your child's immunosuppression and any transplant related issues. It is important for you, your child's personal physician and the transplant team to communicate with each other. The hospital staff will provide you with helpful information to give to your child's doctor.
Because some medications may interfere with the immunosuppressants your child is taking, make sure that any doctor prescribing new medications is aware of what your child is currently taking. If you are buying any over-the-counter medicines, check with your pharmacist or transplant coordinator to make sure they are safe for your child to take. This also includes alternative medicines. Some herbal and homeopathic remedies have active ingredients that can interact with your child's immunosuppressants and may affect the levels of medication in your child's bloodstream.
Always remember to contact a member of your transplant team if you have any doubt or need any advice. They are there to help you.
It is helpful and important to be able to recognize possible signs of infection and rejection and to know who to call if your child experiences any of these things. If your child is an infant and you notice an increase in irritability, this may be a sign of infection or rejection. Other signs of infection or rejection for children and infants are a fever greater than 100.5 auxiliary or 101 by mouth, increased ostomy output or diarrhea, bloody stool, poor appetite, lethargy or tiredness, abdominal pain, and vomiting.
If your child does not have these signs or symptoms, but you feel that something out of the ordinary is happening, do not hesitate to call your child's doctor. If anything worries you, especially in the fist six months after transplant, it warrants a call to the transplant team.
If your child experiences any of these things soon after surgery, call or page your child's transplant coordinator first. If your child is further out from surgery and you live outside of Pittsburgh, call your local pediatrician and have a call or page into your transplant coordinator.
Always remember that you should call 911 in the event of an extreme emergency.
Eating may be one of the biggest challenges and adjustments your child faces after a successful small bowel transplant. Ideally, your child will be able to meet all of his or her daily nutritional and caloric needs without the need for a g-tube. The goal of occupational and speech therapy prior to and post transplant is to prepare your child to eat and drink by mouth and to encourage interest in eating. After three years, only 27% of children with small bowel transplants still have a g-tube. Only 8% are in occupational therapy, and 11% are in speech therapy.
Once your child's appetite and desire to eat return, he or she will probably not need a special diet at home. Still, it is a good time to think about establishing healthy eating habits. Eating a balanced diet is a good way for your child to take care of his or her new organ, and it's something your whole family can do together.
It is advisable to follow a no-added-salt diet for the first three months post-transplant. During this time, your child may be on a steroid medication (such as prednisone) which encourages fluid retention. Too much salt may further increase this, and is also linked with high blood pressure. Salt substitutes are not recommended as they contain high levels of potassium.
Once your child is feeling better and able to meet nutritional needs without the help of a g-tube or supplemental feedings, he or she will be eating more 251 than before transplant. Steroids and other immunosuppressant drugs can cause an increase in fluid retention and an increased appetite. As a result, your child may gain weight, but this should not be excessive.
Your child's spirits are likely to soar once at home and away from the hospital setting, and he or she may be anxious to get into a normal routine.
Improving your child's quality of life is an important goal of small bowel transplant. The transplant team wants your child to be able to resume and maybe even for the first time in his or her life have normal childhood activities once your child recovers from surgery.
Your child may need extra help getting into a routine and feeling comfortable with his or her newfound freedom and potential. Developmental programs at school and physical therapy can help your child regain confidence and self-esteem.
Before the transplant, your child may have felt too tired or too unwell to exercise regularly or at all. Now that your child has a new small bowel, he or she should start to feel better. Physical activity is actually encouraged. Routine childhood activities like biking, swimming, t-ball and hiking should be resumed within the first year depending on your child's rate of recovery. From an infection point of view, it is safe to go swimming after about three months. It is a good idea to set up an exercise routine. Walking is a great way to start!
For the first three months after your child's transplant, heavy lifting and vigorous sports are restricted. By one year post-transplant, your child should be able to return to most regular sports. Some sports like football, hockey, and wrestling should be avoided. They involve direct, rough contact which could cause injury or internal damage.
In the hospital, your child will be given an appropriate exercise program by a physical therapist (PT). Your child's PT will help your child do different types of exercise:
Continue this program at home, beginning at an easy level and progressing. If your child continues physical therapy when he or she returns home, your PT can help customize and modify an exercise program as needed.
If your child experiences sudden pain or shortness of breath during an activity, he or she should stop right away. Contact your doctor if pain persists. It is also best not to exercise directly after a meal. If your child has a temperature, is fighting a cold or the flu, or feels tired or generally under the weather, it is better to skip exercise that day and get some rest.
Another great way for your child to gain confidence and develop new friendships is to attend Camp Chihopi, sponsored by Starzl Transplant Institute. Camp Chihopi is a great opportunity for your child to ease into childhood activities ranging from arts and crafts to horseback riding and volleyball in a comfortable and welcoming environment.
Children's Hospital of Pittsburgh of UPMC understands that successful recovery and care for post-intestine transplant surgery extends well beyond the hospital stay. Below we've compiled information to help parents and caregivers understand the medical and emotional needs of your child or teen once they leave the hospital.
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