When you receive the call that an organ has been located, you will be instructed to come immediately to the hospital so your child can be admitted and prepped for transplant surgery. The transplant coordinator will inform you of the time of the procedure, and will direct you and your child to the location for admission to the Hospital.
Before surgery, your child will be examined by the transplant team, the transplant surgeons and anesthesiologists. Other activities that will take place before surgery include:
Before surgery, you will be asked to sign a consent form giving the surgeons and anesthesiologists permission to perform your child’s lung transplant. During most of the preparation period, you will be allowed to stay and visit with your child. When it is time to go to the operating room (OR), the anesthesiologist will take your child to the OR.
You may accompany your child on their way to the operating room, and once your child goes into the OR, you will be taken to a waiting room. The assigned cardiac intensive care nurse will stay in touch with you throughout the surgery to keep you informed about your child’s progress.
The timing of your child’s lung transplant surgery will depend on the progress of our team of surgeons and specialists, sometimes referred to as the “donor team,” who had traveled to the hospital where the donor is located to remove the lungs. These specialists keep the surgeons at CHOP informed of their progress with getting your child’s new lungs.
Due to the fragile nature of the lung tissue, at anytime during this process, from admission until removing the lungs from the donor, the lungs may become unacceptable for transplant. When this happens, it does not affect your child's status on the wait list. We do not remove our listed patients until the time of transplant event.
Once in the operating room, doctors and nurses will continue to support and prepare your child for the lung transplant surgery. Our Cardiothoracic Anesthesia team will give your child medicine to help her relax and sleep quickly, and will remain with your child until he/she returns to the Cardiac Intensive Care Unit (CICU) for recovery post transplantation.
Pediatric lung transplantation surgeries typically take five to seven hours. Our cardiothoracic surgeons will make an incision that extends from side to side under the breastbone. Your child will be placed on cardiac bypass, her lungs removed, and the donor lungs implanted.
When your child’s lung transplant surgery is over, the surgeons will update you and your family on her current medical condition and surgical outcome. After surgery, your child will be brought back to the cardiac intensive care unit with the following equipment in place:
In general, the breathing tube will be removed within a few days after surgery, and pain medication will be delivered through an epidural catheter.
Usually within one week of surgery, most children are ready to be transferred to the General Pulmonary floor. Chest tubes are usually removed a few days later and by two to three weeks after surgery, your child should be ready for discharge.
During the hospital recovery and rehabilitation phase of the transplant process a lot of different people will be involved in your child’s care including doctors, nurses, pharmacists, respiratory therapists, physical therapists, dietitians, social workers and child life workers. Again, we encourage you to ask questions about your child’s care, particularly if there is something you do not understand.
Following transplant surgery, infection control will be an important element of his/her care, emphasized by all team members. We will discuss infection control measures with you to assist in avoiding potential infection while in the hospital and in the community. We will ask all visitors about recent or current illnesses not to visit your child in the hospital until all symptoms have resolved. We will also limit the number of visitors to decrease the risk of infection.
Post transplantation rehabilitation includes a combination of chest physiotherapy, proper nutrition, medications, infection control and exercise with appropriate periods of rest. Discharge education will be provided by all team members about each step of the recovery process to help facilitate a successful transition to home.
Your child and your family will be involved in a number of activities designed to:
We encourage you to ask questions about your child’s care, particularly if there is something you do not understand.
A daily schedule of expectations will be set up for you and your child to follow prior to discharge from the hospital. You will receive a binder, individualized for your child which allows you to keep all educational materials, medication schedule and post-transplant schedule in one location.
At the time of discharge, we will arrange for appropriate planned follow-up appointments for up to one year after a lung transplant. This schedule will be created on an individual case basis.
Because rehabilitation and clinic schedules are intense during the first three to four weeks after discharge, we may ask you to stay in the Philadelphia area during that time.
The two most common complications in the early period following lung transplant are infection and rejection. In order for your child’s new lungs to be accepted by the body, his immune system must be suppressed with medicines. If the immune system is not suppressed enough, your child’s body may try to reject the new lungs. Also, with your child’s immune system suppressed, your child is more at risk for
The transplanted lungs are foreign tissue and the body’s natural immune response is to reject them. To prevent rejection, your child must take immunosuppressive medication. This type of medication greatly decreases your child’s ability to fight off infection. As a result, post-transplant care focuses on monitoring your child for signs of infection or rejection and for any side effects related to the medication.
This requires frequent visits to the transplant clinic — at first every other week or so, extending to every three months by the end of the first year. If your child experiences a fever or any change in symptoms, we encourage you to contact our pediatric lung transplant advanced practice nurses, who are on call 24 hours a day, seven days a week.
The earliest sign of rejection is a decrease in lung function. You will be given simple testing equipment to monitor your child's lung function at home each day. In addition, surveillance bronchoscopies and biopsies are scheduled at 6 weeks, 3 months, 6 months, 12 months, and 18 months post transplant and as needed, depending on the patient's rejection history or infection risk.
After a lung transplant, infections caused by bacteria, viruses, or fungus are of great concern because the drugs your child is taking to prevent rejection increase the possibility of infections. Remember that the drugs your child is taking to suppress his/her immune system make it easier for infections to occur. Sources of infection include not only other people and things, but your child’s own body as well.
For example, bacteria in your body live in places like your mouth and digestive system and help you to breakdown and process food. Also, because the lungs are open to air it is easy to breathe in germs.The diagnosis of infection will be based on cultures taken of your child’s blood,sputum (phlegm,) urine, and other sources, as well as other tests including blood samples, x-rays, etc. In the hospital, steps to prevent infection include:
While our outcomes are among the best in the world, survival rates for pediatric lung transplantation vary depending on a child’s diagnosis and general condition at the time of surgery. We will talk with you at length about your child's specific situation and projected prognosis.