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Discharge Planning for Your Child with a Tracheostomy With or Without a Ventilator

Discharge Pathways

Patients are discharged once they are medically stable, and no longer need inpatient level of care. Your care team is dedicated to helping you prepare for life after discharge from the hospital.

As caregivers, you have 3 main pathways to consider:

  1. Discharge child to home, with trained caregivers and home nursing

  2. Discharge child to home, with trained caregivers, home nursing, and ancillary caregivers

  3. Discharge child to a transitional care center

Caregivers who choose Pathway 1 or 2 may be unable to meet the training, home readiness, home nursing, or ancillary caregiver requirements. Caregivers who are unable to meet Pathway 1 or 2 requirements will need to proceed with Pathway 3 and receive referrals to a transitional care center (TCC). This decision is usually made with the Care Team.

Pathway 1: Discharge to home, with trained caregivers and home nursing

Your child will require a home that has been adapted to meet their medical needs. This includes medical equipment, home nursing, and trained caregivers.

To be discharged to home, caregivers should be aware of the following requirements:

Caregivers:

  • 2 caregivers

  • Caregivers can be friend, relative

  • Caregivers must be 18 years or older

  • Second caregiver can live in home with child or live close by. Caregivers must agree to care for child in single home.

Housing:

  • Stable place to live with plans to stay in current home until discharge

  • Home can be house, apartment, or townhouse

  • Home must have space and electrical capacity for medical equipment and home nursing

  • Child needs to have own dedicated space (no one else sleeping in room with child)

Home nursing:

  • Covered by healthcare insurance

  • Sufficient home nursing:

    • Pathway 1: staffed 24 hours a day for 7 days a week for 2 weeks, then 16 hours thereafter (preferred)

    • Pathway 2: sufficient schedule supplemented by ancillary trained caregivers with schedule approved by primary discharging team

Training and meetings:

  • Caregivers complete all required training and discharge tasks within designated time frame (see Weekly Discharge Checklist for details)

  • Attend meetings with staff

  • Reliable transportation to and from hospital

  • Timely notification if unable to attend scheduled training or meetings

Pathway 2: Discharge to home, home nursing and ancillary caregiver (s)/ watcher

There are times where adequate home nursing is not available to discharge safely to home. In this case, ancillary caregivers, or watchers, can be trained to help supplement the need for trained individuals to help care for your child. Requirements for this are made on a case-by-case basis and should be discussed with your child’s care team. Medical daycare may be available to help care for your child as well.

Pathway 3: Discharge to a transitional care center

Transitional Care Centers (TCC) are safe places for technology-dependent children to live and receive skilled care. This can be temporary or permanent. These centers have less restrictive environments than a hospital, which is great for child development. While training is not a requirement for TCC discharges, caregivers still have an opportunity to train and participate in their child’s care while at CHOP.

Below is more information about most transitional care centers:

Staffing:

  • Guaranteed on-stie 24-hour nursing

  • Patients will continue to receive current therapies (Reparatory Therapy, Physical Therapy, Occupational Therapy)

Other patients:

  • Most are pediatric patients. Most are also technology dependent

  • May have tracheostomies or feeding tubes

Family involvement:

  • Training is offered for caregivers if desired

  • Families are fully involved in decision making

  • Families can attend outpatient appointments

Transportation:

  • Transportation assistance is often provided for caregiver visitation and training

Activities:

  • More interaction with other children than at hospital

  • More time spent outside or room than at hospital

Tours:

  • Tours are encouraged and can be arranged through your Case Manager or Social Worker
    See page 11 for information about locations of transitional care centers.

In order to discharge to a transitional care center:

  • Highly Recommended: Caregiver(s) visit

  • Required: Caregiver(s) sign consent

  • Required: Insurance authorization

Pathway 1: Discharge to Home

Weekly Discharge Checklist for home discharge: Training and non-training tasks

The hospital requires that 2 caregivers complete the training requirements below. Training requires about 4 to 6 hours each week, for approximately 8 weeks.

First reviews and determination of proficiency should be scheduled on different days. Caregivers may train ahead of the schedule below. Training times will be scheduled in advance. The Nurses and Respiratory Therapists offer training, and they are available both during the day and at night. Training equipment is available if needed, such as a trach doll or training ventilator.

Caregivers are considered fully trained once they pass a 24 hour stay, listed in week 8.

Our interactive learning module,  "Breathe Easy: Caring for Your Child with a Tracheostomy at Home," contains instructions for all of the skills that you need to care for your child’s tracheostomy. In your first tracheostomy care class, the nurse will show you how you can use this module to enhance your learning.

Caregiver 1: _______________________________________

Caregiver 2: _______________________________________

Weekly Discharge Checklist for Home Discharge: Training and Non-training Tasks

Legend

* Must complete before Tracheostomy Tube Change Class- Routine and Emergency

** Must complete before CPR with Trach Class

 

 

 

 

 

 

 

 

 

 

 

 

Map of transitional care locations:

 

 

Where are transitional care centers nearby?

Speak with your Case Manager or Social Worker about a transitional care center that best meets your child’s needs and insurance plans.

Pennsylvania transitional care or long-term care

Pediatric Specialty Care

pediatricspecialty.com

  1. 3301 Scotts Lane, Philadelphia, PA, 19129; 215- 621-6155

  2. 90 Cafferty Road, Point Pleasant, PA 18950; 215-297-5555

  3. 120 Rider Avenue, Lancaster, PA 17603; 717- 394-0882

Pedia Manor

www.pediamanor.org

  1. Thatcher Home, 290 Thatcher Road, Quakertown, PA 18951; 215-529-7650

  2. Durham Homes I and II, 6095 Durham Road, Pipersville, PA 18947; 215-766-2183

  3. Old Beth Home, 2440 Old Bethlehem Pike, Quakertown, PA 18951; 215-538-5425

  4. Milford Square, 2326 Milford Square Pike, Quakertown, PA 18951; 215-529-459

ChildWay Pediatric Services

www.childway.org

  1. 607 East Main Street, Lansdale, PA 19446; 215-362-4950

  2. 640 West Main Street, Lansdale, PA 19446; 215-808-4860

KenCrest

www.kencrest.org

  1. 6341 Ridge Avenue, Philadelphia 19128; 215-713-3880

  2. 1 Waterman Avenue, Philadelphia 19118; 215-280-7437

Ridge Crest

www.lifepath.org

  1. 5 Life Mark Drive, Sellersville, PA 18960; 215- 257-1155

The Children’s Institute

www.amazingkids.org

  1. 1405 Shady Avenue, Pittsburgh, PA, 15217; 412-420-2400

Pennsylvania rehab

CHOP Seashore House

www.chop.edu/centers-programs/center-rehabilitation

(Does not accept patients who need mechanical ventilation)

  1. 3401 Civic Center Boulevard, Philadelphia, PA 19104-4399; 215-590-7469

Good Shepherd

www.goodshepherdrehab.org

  1. Good Shepherd Specialty Hospital @ Lehigh Valley Hospital-Muhlenberg: 2545 Schoenersville Road, Bethlehem, PA 18017; 484-884-5000

New Jersey transitional care or long-term care

Voorhees Pediatric Facility

www.forkidcare.com

  1. 1304 Laurel Oak Road, Voorhees Township, NJ 08043; 856-346-3300

The Phoenix Center

phoenixcrp.com

  1. 1433 Ringwood Avenue, Haskell, NJ 07420; 973-839-2119

Children’s Specialized Hospital

www.childrens-specialized.org

  1. Mountainside Long Term Care Center: 150 New Providence Road, Mountainside, NJ 07092; 888-244-5373

New Jersey rehab

Children’s Specialized Hospital

www.childrens-specialized.org

  1. 200 Somerset Street, New Brunswick, NJ 08901-1942; 888-244-5373

Weisman Children’s Rehabilitation Hospital & Outpatient Center

www.weismanchildrens.com

  1. 92 Brick Road, Marlton, NJ 08053; 856-489- 4520

Delaware transitional care or long-term care

Exceptional Care for Children

www.exceptionalcare.org

  1. 11 Independence Way, Newark, Delaware 19713; 302-894-1001

Maryland/Virginia transitional care or long-term care/rehab

Kennedy Krieger Institute

www.exceptionalcare.org

  1. 707 North Broadway, Baltimore, MD 21205; 443-923-9412

Mount Washington Pediatric Hospital

www.exceptionalcare.org

  1. 1708 West Rogers Avenue, Baltimore, MD 21209; 410-578-8600

New York transitional care or long-term care

Blythedale Children’s Hospital

www.exceptionalcare.org

  1. 95 Bradhurst Avenue, Valhalla, NY 10595; 914- 592-7555

St. Margaret’s

www.stmargaretscenter.org/htmlweb/homepage.html

  1. 27 Hackett Boulevard, Albany, New York 12208; 518-591-3300

Sunshine Children’s

www.sunshinechildrenshome.org

  1. 15 Spring Valley Road, Ossining, New York 10562; 914-333-700

 

Medical stability

Patients are discharged once they are medically stable and no longer need inpatient level of care.

Your care team will be monitoring your child for medical stability based on these categories:

  • Child switches from ICU ventilator to home ventilator

  • Child has 2 weeks of medical stability without changes to medications, labs, or ventilator settings

  • Child has weight gain and growth

  • Child tolerates current sedation wean plan

Let’s partner together

CHOP’s goal is to have your child discharged from the inpatient setting as soon as medical stability has been established so that your child can grow and develop outside of the inpatient hospital setting.

We have reviewed this information with a staff member. We understand the discharge pathways for our child. Share which pathway you choose with your team

Pathway 1: Discharge to home with trained caregivers and home nursing

  • We meet CHOP’s requirements to discharge our child to home.

  • 2 caregivers will complete all training and discharge tasks according to the timeline.

  • We will make ourselves available for meetings with staff, either via phone or in person.

  • If our family or the Health Care Team identifies barriers to completing the requirements, a focus meeting will be scheduled to review expectations and discuss transfer to a Transitional Care Center.

Pathway 2: Discharge to home with trained caregivers, home nursing, and ancillary caregivers

  • We meet CHOP’s requirements to discharge our child to home.

  • 2 caregivers and any ancillary caregivers will complete all training and discharge tasks according to the timeline.

  • We will make ourselves available for meetings with staff, either via phone or in person.

  • If our family or the Health Care Team identifies barriers to completing the requirements, a focus meeting will be scheduled to review expectations and discuss transfer to a Transitional Care Center.

Pathway 3: Discharge to Transitional Care Center

  • Within the next few weeks, we will visit and sign consent to discharge our child to a Transitional Care Center.

  • We will make ourselves available for meetings with staff, either via phone or in person.

 

Reviewed April 2024 by Amanda Manzi, DNP and Janessa Shainline, MSN, RN

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