Coming in for your transplant surgery
When an organ becomes available, a transplant coordinator will call you. Calls like this often come at night, so be sure to answer your phone.

The coordinator review your child's current health status, and give you instructions for coming to the hospital. Please be sure to:

• Have your coordinator's name and the hospital’s phone number.
• Ask if you should stop any of your child's medicines. If your child takes insulin for diabetes, ask what to do about the insulin.
• Stop all foods and liquids. If your child has taken insulin, make sure you mention this to the nurse coordinator.
• Remember to bring the items you'll need while in the hospital (transplant handbook, etc.).

Once you arrive at the hospital, please stop at the Admissions Department. They will know you are coming and will direct you to the Pediatric Intensive Care Unit. After your child is admitted, we will do blood tests and prepare your child for surgery.

Your family can stay with your child until it is time to go to the operating room. We will then direct you to the waiting area on the third floor. After your child's surgery, the doctors will meet with you in the waiting area.

The transplant surgery
The actual heart transplant take about six to eight hours. A nurse coordinator will be with your child before and during surgery. He or she will give your child emotional support and keep your family informed during the surgery.

Post-operative care
After surgery, your child will be taken to the Pediatric Intensive Care Unit (PICU). Your child will stay there until he or she is stable and can breathe on his or her own. Visiting hours are limited for other family members, but parents can stay with their child 24 hours a day. Please ask your nurse for more information.

Your child may be slow to wake up after surgery. We will give your child medicine to control pain and to help your child relax. You will find that several tubes were placed in your child's body during surgery. 

• Endotracheal (breathing) tube: Your child will have a tube in his or her throat to help with breathing. It may be uncomfortable, but we will give your child medicine to help him or her relax. Your child cannot talk while the tube is in the mouth. The doctors will remove the tube when your child's lungs are working well and your child is awake enough to breathe on his or her own. Some people do not even remember having this tube in place, because of the medicines given for relaxation.
• Chest tubes: Chest tubes will be placed to help drain fluid from your child's chest. Your child will have the tubes for a few days.
• Foley catheter (urinary tube): This tube drains the urine from your child's bladder. It is important to monitor your child's urine output and kidney function carefully.
• Intravenous (IV) lines: Your child will have many IV lines, including a "central line." This tube is placed in a large vein in your child's neck or leg. We use it to give medicines, fluids and blood transfusions. It is also used to take blood samples and check fluid pressures in the body.
• Nasogastric (NG) tube: This helps keep your child's stomach empty so your child doesn’t get nauseated (feel sick to his or her stomach). During surgery, the tube is placed in the nose and goes down into your child's stomach. It will stay in place until your child can pass gas.

We will draw blood from your child daily for tests. Your child will also have X-rays. Visits from your child's surgeons and cardiology teams will also occur several times each day.

Once your child is stable and the breathing tube has been removed, we will move you to the pediatric hospital floor.

You will learn about your child's medicines and how to take care of your child. You and your support person(s) will be required to attend transplant classes. Your child's nurse will schedule these for you. Please bring the transplant handbook you received during your child's evaluation. This provides general information and a place to write your child's lab results. Your child's nurse will work closely with you as you learn. By the time you go home, you will know how to draw up and give your child's medicines, record your child's lab values, check your child's blood pressure and more. Once you go home, you will need to keep track of your child's lab values, blood pressures, daily weights. Please bring your lab book to all clinic visits.

Leaving the hospital
You can expect your child to stay in the hospital for seven to 14 days after surgery. Some children stay longer, depending on their condition before surgery. Your child's first biopsy to check for rejection will be done before discharge. This procedure is the same as a right heart catheterization, and a few heart cells will be analyzed for evidence of rejection. There should be minimal discomfort from this procedure, though your child may feel some pressure when the catheter is inserted.

After leaving the hospital, you and your child will need to stay in the Twin Cities area for up to three months. During this time, you will come to the clinic often for exams, biopsies, and labs. Bring your child's medicine card and lab book to each clinic visit.