When donor lungs become available, the transplant coordinator will call you.  At this time, you will be told where to go in the hospital and should ask if your child should stop eating and drinking to prepare for surgery.  

Admission for surgery  

When you arrive at the hospital, staff will:  

  • Perform tests: blood work, chest X-ray, EKG, echocardiogram, and vital signs.  
  • Place an IV. 
  • Review consent forms with you.  
  • Prepare your child for surgery.  

A separate team — the donor team — will go pick up the lungs.  

 Typically, on the day of the transplant  the anesthesiologist will allow you to take your child into the operating room and stay with them until they are put to sleep. Ask your transplant team beforehand if this will be a possibility.  

Transplant surgery  

Before surgery, your transplant team will: 

  • Examine the lungs before surgery starts on your child; we call this “visualization”. Once visualization happens and the donor lungs are deemed to be healthy, your child’s surgery will begin. 
  • Remind you about the possibility of a “dry run”, in which the medical team accepts organs for your child but then at some point during the process, determines the lungs are no longer fit for transplant, and your child will be woken up from anesthesia without having undergone transplant.  
  • The lung transplant surgery itself generally lasts between 8-12 hours for which parents/guardians will be periodically updated by OR staff with your child’s progress. 

Post-transplant recovery  

  • Your child will arrive to the floor with a breathing tube, with a goal of progressing to removal of the breathing tube a day or two after surgery.  
  • Your child will have 2-4 chest tubes in place to drain fluid and air from the chest cavity. 
  • Once your child is stable post operatively, the medical team and physical therapists will work towards mobility and ambulating as early as possible, generally 24-48 hours after surgery. 
  • Your child will stay in the ICU for around 5–7 days. It can sometimes be longer depending on your child’s illness severity going into transplant. 
  • Then they’ll move to a regular hospital room for more recovery time. Many children will be ready for discharge around 2 weeks after transplant, although this can be longer depending on your child’s needs. Some children will require inpatient rehab for a few weeks depending on their pretransplant functional status. 

During the hospital stay, the care team will:  

  • Help your child heal and regain strength. 
  • Monitor how well the new lungs are working.  
  • Teach your family about medications and home care.  
  • Create a plan for care after discharge.  

Easing your child’s anxiety

Hospital visits and surgery can be scary. Here are ways to help your child feel more at ease:

  • Bring familiar things from home: toys, pictures, blankets.
  • Try to have a family member present as much as possible.
  • Explain procedures using simple, calm language.
  • Ask doctors or nurses to use drawings or kid-friendly explanations.
  • Stay positive – your attitude can affect your child’s.
  • Reassure them: illness is not a punishment.
  • Encourage your child to talk about how they feel.
  • Help friends call, visit or send cards while your child is in the hospital.