Pediatric Transplant Patient Information for Parents

For Parents:

Receiving the news that your child may need a solid organ transplant can be both exciting and overwhelming. Even if your child has been sick for the majority of their life, undergoing a transplant is a very serious and complicated procedure. You may have many questions regarding the transplant, Nebraska Medicine hospital, how the care for your child will be handled, and how Nebraska Medicine can best support you, your child and your family. We understand leaving a ‘hometown’ hospital, staff and community can be extremely difficult. Nebraska Medicine wants to help you with your transition to make it as smooth as possible. Below are some questions that you may have as a parent. If you have additional questions, please contact the Child Life staff or Social Work staff.

 

Who will coordinate travel from one hospital to another?

Travel between two hospitals will be coordinated by Social Work at both facilities. If you have questions regarding travel, please contact the Social Work office at 402.559.4420.

 

What should I bring with me?

What you bring with you may depend on your length of stay as well as how much time you’ve had to prepare and how much room there is to bring items for you and your child. Below are some recommendations that have come from hospital staff as well as other parents who have experienced long term stays:

  • Extra clothes (more than you think you’ll need)
  • Small toiletry items for yourself
  • Electronics including phones, tablets and chargers
  • Pair of comfortable shoes and slippers if rooming in with your child
  • Books, adult coloring books, items to occupy your time during the day
  • Blanket for yourself (if there is room)
  • Insurance information
  • Valid ID

For siblings, pack similar items, if not walking, bringing a stroller is helpful.

Packing for your child looks similar to packing for yourself. Work with your child to determine items that will he/she would like to bring with them and assist them in creating their own list as well as packing. Allowing them a role in the process will assist them in their own preparation for the journey to Nebraska Medicine. It is recommended to bring comfort items with the child, such as a loved stuffed animal or blanket as well as a few favorite toys. Picture books are also a great way to keep your child in contact with friends and family at home.

 

Where will I stay while my child is at Nebraska Medicine?

There are a several places you may be placed while your child is being treated at Nebraska Medicine including the Nebraska House, the Ronald McDonald House, and area hotels. One parent/guardian can also room in with the patient. To utilize these housing services please contact the Social Work office at 402.559.4420.

 

If I have other children, where will they stay?

Siblings are welcome to make the journey as well. The amount of time you anticipate spending in Omaha may determine if you bring siblings with you. If you have another child who is required to stay with you (such as an infant) that child may be eligible to room in with you and your child who is a patient. Please work with Nebraska Medicine Social Work to find the best housing solution for your family. Contact the Social Work office at 402.559.4420.

 

If I think I might need financial assistance, what do I do?

Please visit the Patients & Visitors section of the website. Click on the Billing & Insurance link at the bottom of the site and choose the appropriate category for the question(s) you have.

 

Does coming to Nebraska Medicine mean my child will receive a transplant right away?

Coming to Nebraska Medicine means your child will be evaluated for the transplant process. However, upon arrival and initial evaluation, you may find out that your child will be a candidate for Nebraska Medicine’s Intestinal Rehabilitation Program (IRP). The physicians at Nebraska Medicine work with many pediatric patients and will work to find what they feel is the best option for your child. To find out more information about the program please visit the Intestinal Rehabilitation Program page.

Once your child is a patient at Nebraska Medicine, resources are also available to help you understand your child’s diagnosis and treatment further. The Consumer Health Information Resource Service (CIHRS) is a service in which a librarian at the University of Nebraska Medical Center McGoogan’s Library of Medicine can research health questions for you and provide you with articles and information regarding your child’s diagnosis and treatment. The materials provided may help you feel more comfortable in speaking with your child’s doctor as well as feeling more confident in asking questions. If you would like to utilize this resource after admission please visit the CHIRS page.

 

Other Considerations:

In preparing for your trip, whether it is far into the future or only a day or two away, there are a few other things to consider. You may need to line up someone to take care of your residence, pets, or projects that are going on at home. It may be helpful to put off large projects until you return. Depending on the length of stay, you may need to prepare other children for your absence and devise ways to keep in touch and let them know that they are still important. For some of our families, parents opt to bring all children to Omaha and enroll in schools in the Omaha community. While it may not be a choice that needs to be made right away, it may come further along in your IRP/transplant journey.

As a parent, please know that you are not alone on this road. Nebraska Medicine has a team of many staff in varying roles to help you navigate the journey ahead. There are also families already in Omaha who will be going through experiences similar to yours and there will be ways for you to connect with them, whether through your living arrangements or at group events your children may be attending. Please reach out and let the staff at Nebraska Medicine know what you need to best help your child and family as you move through this complex journey.

 

For the Your Child:

If you are coming to Omaha for a solid organ transplant, we know there must be a lot of feelings inside of you. Patients of all ages often feel better when they know what to expect, so the more you learn, the less stressful your experience is likely to be. Nebraska Medicine Child Life would like to tell you more about the hospital and programs to help ease the transition of coming here. It is hard to leave your home hospital, doctors, nurses and your friends and family. We are here to help you feel comfortable as you begin your journey in Omaha.

We created this guide to help you know what to expect if you're coming to Nebraska Medicine for a transplant.