Pediatric Transplant Center|移植旅程

A transplant isn't just a surgery. It's a journey.

Transplantation is also the beginning of a long partnership. You, your child and your family will become a part of theBoston Children’s transplant team, and together we will pursue the best possible outcome for your child.

移植是持续一生的旅程。通常有不确定性，有时会等待，有时会延长住院，然后在手术结束后对生活进行调整 - 但是我们的护理和支持永远不会动摇。我们在这里不断指导您的每一步。

评估您的孩子的移植

When transplant might be a treatment option for your child, the first step in the journey is an evaluation. It is an opportunity for the transplant team to get to know your child, and an opportunity for you and your family to ask questions and address concerns.

The evaluation also is a time for education. The many tests and consultations will begin to teach you and your child about the transplant process, and the results of the tests will determine if a transplant is the optimal path of care.

评估测试

The evaluation takes place over the course of several days and may be done as either an inpatient or outpatient, depending upon the health of your child. During the evaluation, your child will undergo a variety of tests and meet with members of the Pediatric Transplant Center to give us a clear picture of overall health. You will also visit with other members of the care team, such as the social worker, child life specialist and nutritionist to evaluate your child’s emotional and physical readiness for the journey ahead.

结果和下一步

After the evaluation, the entire transplant team will meet to decide if your child is a suitable candidate for a transplant. Our multidisciplinary approach to care ensures that every potential treatment option is reviewed and given thoughtful consideration. Generally, there are three possible recommendations:

1.评估已经确定无法移植

2.评估已经确定还有其他治疗方法或药物应在移植前考虑。

3.评估已经确定移植是一种治疗选择。

In all of these situations, the transplant team will work with you and your child’s physicians to develop a coordinated care plan.

Waiting for an organ

Once you and the transplant team decide a transplant is the best option, your child will be placed on the United Network for Organ Sharing (UNOS) list as a potential transplant recipient. UNOS is responsible for organ distribution for transplant in conjunction with the local Organ Procurement Organization (OPO) and oversees the allocation of many different types of organs.

How the list works

等待移植的孩子会接受几个因素的“积分”，包括他们已经等待多长时间，接收者状况的严重程度，与可用器官的比赛接近度以及移植中心与捐助者位置相关的位置。每个器官的匹配标准略有不同。我们将将您的孩子的数据发送到UNOS，并通过可能会影响您孩子在等待名单上的位置的状况更改更新它们。

When an organ becomes available, a computer searches the list and ranks all candidates in order of their total number of points. The organ is offered to the candidate with the most points. If the match isn’t right, or if it’s not the right time for the patient to receive a transplant, the organ is offered to the next candidate on the list. For more information about the UNOS list, visithttp://www.unos.org。

Preparing your child and your family

Waiting is often the most difficult stage of the journey since you don’t know just how long the wait will be, but your transplant team is here to offer our physical and emotional support. While you wait, we'll work closely with you to monitor your child and make certain your child remains a transplant candidate. It is important for your child and your family to maintain a sense of normal, eat healthy foods and stay as active as possible to help your child prepare for surgery — and recover after surgery.

Be ready. A donor may become available anytime, day or night. When we contact you to come to the hospital timing is critical, so you need to arrive as quickly as possible. We often need to have your child ready to go into the operating room within hours of your arrival.

手术：准备和恢复

Once you’ve been notified a donor organ has been found, things move very quickly. Your surgeons, anesthesiologist and nursing staff will prepare you for the upcoming procedure. It’s normal to be nervous, but you can rest assured — your child is in good hands. Our transplant team is among the most skilled and experienced in the world and will make sure you and your family are comfortable and informed about the progress of the transplant throughout the surgery.

恢复和手术后护理

Depending on how closely your child needs to be monitored following the surgery, he or she will go to either the Intensive Care Unit or the Transplant Unit. During this time, our team of transplant pharmacists, dietitians, nurses, and others will educate you and your family on all aspects of caring for your child after the operation. This will include information about post-transplant medications, activity, diet and any other specific instructions.

我们知道移植操作可能是一个不安的时期。请记住，您孩子的整个移植团队将可以回答问题，指导您在整个住院期间，并确保您准备在家管理和维护孩子的健康。

Life After Transplant

在您的孩子受到警惕的眼睛和移植团队的安全照顾之后，回家可能会令人生畏。别忘了，这是一个共同的旅程。我们与您同在的每一步，都会为您提供为返回家园做准备所需的所有信息。我们的目标是帮助您的孩子和您的家人在移植后尽可能充实和正常的生活。这将需要时间，但仍将是我们的目标。

跟随-up appointments

我们将要密切关注您的孩子，以确保一切顺利。后续访问至关重要。我们将检查您孩子的药物，如果需要，请调整剂量，寻找并治疗可能与您和家人一起出现并进行签到的任何并发症。

For the first month or so, we will want to see your child frequently — typically twice a week. Over the first year, this decreases to once a week, then every other week, then once a month, then every two to three months. Generally, after a year we will see your child every three to six months.

Medications

跟随ing surgery, your child will need to take several medications daily. When a new organ is placed in your child's body, the immune system does not recognize its intended purpose. It sees the organ as something foreign and will try to fight it off. This is normal, however — in the case of a transplanted organ — we want to prevent the immune system from doing its job. This means your child will have to take immunosuppressants — also known as anti-rejection medications — to weaken the immune system, keep the organ safe and prevent the body from fighting off the new organ.

You will be taught your child’s medication schedule, proper administration of the medication, monitoring for side effects and monitoring for complications following the surgery. We will work closely with you and will provide patient/parent discharge education information, which will be developed specifically for your child.

Rejection

Although it sounds scary, rejection is a normal reaction of the body’s immune system to a foreign object, and it may occur following a transplant.

Our goal is to give your child adequate immunosuppressants to prevent rejection, while using the lowest dose possible to prevent side effects. Finding a good balance takes time and many medication adjustments may need to be made within the first few months.

正是在此期间，最常见的是拒绝。可以通过可疑症状或常规检查来识别它。在随访期间进行了许多测试，以帮助识别排斥，确定对移植器官的影响并制定治疗计划。有时，有必要将您的孩子重新装满医院以控制拒绝过程。

Infection risk

由于免疫系统的活跃程度较低，因此您的孩子感染的风险更高。将提供抗感染药物以预防或抗击感染，并可能给予其他药物以控制副作用。

Transition Care for the Teen Years

青少年是移植接受者的关键时期。当他们过渡到成年并变得越来越独立时，青少年需要对药物，后续任命和其他护理承担更多责任。

The challenges of compliance

随着您的孩子开始管理自己的护理和医疗决定，建议治疗或药物可能具有挑战性。我们的移植团队知道如何在过渡到青春期时与孩子们进行激励和沟通，并有助于强调合规的重要性。我们将与整个家庭合作，设定期望，识别和评估任何潜在的依从性风险。

A proactive role

管理自己的健康（包括移植器官的健康）对于过着悠久而幸福的生活很重要。学习这项技能需要很多年。

Taking charge of your own health is a journey that your transplant team will encourage your child to start at age 12. That way, in the late teens or early 20s, your child will be ready to care for themselves. This includes choosing a transplant center that specializes in adults and checking in with that team on a regular basis.

在未来的几年中，我们将确保您的孩子拥有他们所需的工具来理解和负责他们的护理，包括：

• teen events to promote peer interaction
• 动手模型和活动
• computer games
• website recommendations
• 评估学习需求的问卷

过渡到成年

成为一个成年人并不意味着你的孩子将洛杉矶e your family’s support or our support. It means your child will take control. The transplant team cared for your child before receiving a transplant and has worked with you and your family to keep your child healthy since.

At the end of the transition road, your child will be an adult, who has taken charge of all of their health care needs. Your child will have a working knowledge of the specialized health care required to take care of their transplant throughout life.