Elective Tracheostomy Surgery for a Child with a Neuromuscular Disorder It can be hard to decide if your child should have a tracheostomy. The purpose of this handout is to give you information about the process if you choose to have a tracheostomy. We hope it will help guide you as you make your decision. Standards of care for a child with a tracheostomy have been developed by the Pediatric Pulmonary Team. If at any time you feel you need to reevaluate your decision, please talk to the pediatric pulmonary team. The pulmonary team helps you get ready for your child’s tracheostomy. The team includes a pulmonologist, advanced practice nurse (APN), your child’s primary nurse, social worker, respiratory therapists, case manager, nurses and others. Parents often ask how long training takes. Training times and coordinating discharge is different from family to family. It depends on how available you are, how well your child is medically, insurance issues, and the availability of home care nursing. The rest of this document walks you through a list of events, guidelines, and expectations for you and your child’s care team.

Making the decision You meet with members of the pulmonary and palliative care teams to talk about the risks and benefits of getting a tracheostomy. This includes changes to your child’s physical health, and life style changes you may need to make such as more equipment and a need for home care nursing. Think about the quality of life and activities your child enjoys. Ask yourself how the tracheostomy may change these activities. This is your decision. The pulmonary team will support your choice. If you would like to know what you need to learn, the information about caring for a child with a tracheostomy is at uwppc.org. Click on Educational Resources; then Self Study Modules; then Pediatric Tracheostomy and Ventilator Care. This is part of the information used to train caregivers about tracheostomy and ventilator care.

Scheduling surgery The pulmonologist makes a referral to the pediatric Ear, Nose and Throat (ENT) surgeons. You may see them in clinic or meet them the day before surgery. Surgery is coordinated with you, your child’s pulmonologist, and the pediatric ENT surgeon’s schedules.

Before coming to the hospital for surgery Decide who will be trained o At least two caregivers need to learn all of your child’s care. o Anyone who will be caring for your child alone needs to finish the whole training process. o Schedule training sessions with the Pediatric Pulmonary Tracheostomy Coordinator. These sessions are provided between 8:30 and 4:30 Monday through Friday. Decide how much nursing coverage is needed in your home to help with the care of your child o Funding typically is available for nurses, RN or LPN, to be in the home when caregivers are sleeping, working and a few hours each week for errands. This is also based on your child’s medical needs. o The out-patient pediatric case manager can help you arrange nursing coverage. The case manager can be reached at 608-890-8045. o Options of agency or independent nursing are based on insurance coverage and where you live. o If you already have independent nurses, they need to be pediatric tracheostomy and ventilator certified to care for your child with a tracheostomy. This is done at the state level and can take several weeks. o Personal care workers or Certified Nursing Assistants (CNAs) are not able to be alone with your child with a tracheostomy. o It is best to arrange nursing coverage before surgery is scheduled to prevent delays in discharge. Other equipment and supplies may be ordered from your home equipment provider. o Meet with your home equipment provider to get the new equipment and learn to use it.

Day before surgery Admission to the general care unit the night before surgery for IV nutrition and hydration. Meet with child life to assist with the starting of the IV and to get ready for surgery. Meet with ENT surgeon and sign consent for surgery. Meet with anesthesia staff. Bring all the supplies you use now. This includes ventilator, suction machine, cough assist machine, feeding pump, and stroller or wheel chair. Bring any new equipment or supplies that have been ordered before surgery. Bring your child’s communication device. Bring list of medicines your child takes. Bring information and supplies about your child’s feeding routine.

Day of surgery Your child is taken to the third floor of AFCH for surgery on the home ventilator. Hospital staff will let you know when you can be with your child and where to wait during surgery. You child is moved to the Pediatric Intensive Care Unit (PICU) after surgery. Your child will have a cuffed tracheostomy tube in place and have black strings called sutures taped to the chest. Your child is on a ventilator after surgery. Tube feedings are started when your child has recovered from the anesthesia.

Day One through Three after surgery Your child stays in the PICU for close monitoring. Feedings and medicines are restarted as tolerated. The home ventilator is restarted and settings adjusted as needed. The sutures stay taped to your child’s chest and the tracheostomy ties are not changed. Hospital staff suctions your child’s tracheostomy tube often to keep it clear of secretions. Airway clearance therapies are given as needed. We would like you to be a part of your child’s care. Staff shows you how to suction the tracheostomy tube and help you learn to suction the tracheostomy tube.

Three days after surgery The ENT surgeons do the first tracheostomy tube change at your child’s bedside. They remove the sutures taped to the chest. After this, routine stoma care, tracheostomy tie changes and tracheostomy tube changes can be done by other hospital staff.

Day three after surgery until discharge Your child moves from the PICU to the general care unit and is cared for by the pulmonary team after the first trach tube change. The size and type of tracheostomy tube, ventilator settings and ventilator circuit is decided by the pulmonary team. A travel humidification plan is developed using an in-line heat moisture exchanger (HME) also called an artificial nose. Caregivers complete several training sessions in a classroom setting outside your child’s room. If you do not want to leave your child in the care of the hospital staff during these classroom sessions, it is your responsibility to arrange for someone who you trust to care for your child. This needs to be someone who is not part of the training process. It is important that all care providers are trained at the same time. Training sessions are scheduled with the Pediatric Pulmonary Tracheostomy Coordinator. There are about eight hours of classroom training.

The classroom training includes talking about information from the manual Caring for Your Child’s Tracheostomy, computer lectures and videos, and demonstrations and practice of procedures on a doll. Topics include: Caring for your child’s tracheostomy tube, stoma and tie changes Humidification with the tracheostomy tube Suctioning your child’s tracheostomy Changing the tracheostomy tube Ventilator terms and settings Emergency care and CPR for a child with a tracheostomy Using the manual resuscitation bag How to put together all of the supplies needed for the “Go bag” for the tracheostomy Each person getting trained then practices the skills on your child with support and supervision from the nurses. The practice and demonstration of skills can be done anytime you are here with your child. Each person needs to be in charge of three tracheostomy tube changes before discharge. Each person has to complete CPR training for a child with a tracheostomy. Your nurse can help you schedule this class. Any new equipment or supplies is provided by your equipment provider and you are taught how to use it. If there are any changes in care, you are taught these changes and have a chance to practice them before discharge. o o o o o o o o

Independent Care Sessions Each caregiver will successfully complete 24 hours of independent care after all the training is complete. These need to be scheduled at least a day or two in advance. Your home equipment is used for the independent care sessions. This time gives caregivers an opportunity to be totally responsible for the care of the child, equipment maintenance, and trouble shooting, using the hospital staff as back up. This allows each caregiver to demonstrate the ability to care for the child independently. The independent care session is not a test, but instead a way to pull together all that you have learned and provide all of your child’s daily cares within the safety of the hospital. If there are areas that need more education or practice, we provide an opportunity to go over that after the session. This is not a marathon. If you like, you can break down the session into more manageable blocks of time such as two twelve hour, or three eight hour blocks. The goal is to experience your child’s cares across a 24-hour day.

A fully trained person must be with your child at all times. o You may take your child out of the room, but you need to stay in the hospital unit to be close to a trained care provider until you are fully trained. o After you have learned to use the necessary equipment, know the procedures including trach tube changes, know CPR and the emergency procedures, and completed your independent care session, you can take your child off the unit and out of the Children’s Hospital. An approved pass is needed to leave the Children’s Hospital. o You must have your child’s “Go bag” with your child at all times. Road trip. Once you have finished your independent care session you take your child out of the hospital on pass before discharge. This includes preparing your child to ride in your car. If needed, we have a car seat specialist to help you make sure your child can be safely transported.

Other arrangements Your primary care physician is notified that your child now has a tracheostomy. Financial resources are arranged in the community as needed and available. Home care equipment and home nursing often needs prior authorization before your child can go home. Your case manager and social worker work together with you to coordinate the available resources. Home care nursing services are coordinated. Your case manager communicates with your identified home care nursing provider to give them information for the plan of care. It is then sent to the state Medicaid office. It may take several weeks to get approval for financial coverage for the needed nursing services. Local services are identified and contacted before discharge to provide home or community based care and follow up after your child goes home. Services may include speech therapy, physical therapy, occupational therapy, community social services, or contacts with local school personnel. These services often include Birth to Three or Early Childhood. We would like you to let your local emergency staff and utility company know that there is a child in the community who has a tracheostomy. This gives emergency staff an opportunity to learn more about your child in the case of an emergency, and for your utility company to be aware of your child’s needs in the case of a power outage. Final decision of a discharge date is negotiated and agreed upon by all involved, which include family, pulmonary team, home equipment provider, home nursing, and community service providers.

Follow up is at the University of Wisconsin pulmonary, neuromuscular or tracheostomy clinic. You are already familiar with the pulmonary clinic and the neuromuscular clinic. The Tracheostomy Clinic is held monthly on a Thursday afternoon. It is staffed by one of the pediatric pulmonologists, one of the pediatric ear, nose and throat doctors, nurses, advanced practice nurse, nutritionist, social work, speech therapy, and respiratory therapy. The visit usually lasts a minimum of two hours because of the number of people to see you in this clinic. Our goal is to have one of your visits in this clinic at least once a year. If you have questions you can reach any member of the pulmonary team by calling 608-263-6420.

Your health care team may have given you this information as part of your care. If so, please use it and call if you have any questions. If this information was not given to you as part of your care, please check with your doctor. This is not medical advice. This is not to be used for diagnosis or treatment of any medical condition. Because each person’s health needs are different, you should talk with your doctor or others on your health care team when using this information. If you have an emergency, please call 911. Copyright © 10/2014 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#7694