Resources FAQs | Patient Education | UC Davis Children's Hospital

Resources and FAQs 


Your child’s disorder may have books, websites, and national organizations devoted to them. Parents often know more about the specific disorder than any individual professional involved in treating the child because they devote hours to researching all available information. The Internet has made it possible to contact other parents with similar concerns.

Financial challenges
Children with severe special needs may need large amounts of time, energy, and money in order to care for them. Depending on your insurance plan, you may need to pay fees related your child’s supplies and equipment. Your child may have appointments with multiple specialists. This may be a financial strain because of increased transportation needs, money for gas, and co-pays for appointments. Admission to the hospital for respiratory infections or issues related to your child’s underlying health conditions may lead to missed work days and loss of wages.

Challenges for couples
The reduced couple’s time is challenging because there is more that needs to be discussed and dealt with, including the feelings of grief and disappointment that sometimes never get processed. The ability to learn to enjoy the positive aspects of your child can only take place after having grieved the loss of what you had expected from that child at birth.

Challenges for siblings
Sibling issues need attention. Parents and professionals often lose sight of the need to help siblings understand the problem that is affecting their brother or sister. Then there is the challenge of trying to reduce the jealousy that results when so much attention is focused on one child or limitations on doing common family activities. It is clear that siblings need an opportunity to voice their questions, concerns, and feelings.

Coping strategies

  • Take a time-out. Practice yoga, listen to music, meditate, get a massage, or learn relaxation techniques.
  • Eat well-balance meals
  • Limit alcohol and caffeine. These beverages can make anxiety worse.
  • Get enough sleep. When stressed, your body needs additional sleep and rest.
  • Exercise daily
  • Take deep breaths. Inhale and exhale slowly.
  • Count to 10 slowly. Repeat, and count to 20 if necessary.
  • Do your best. Don’t aim for perfection.
  • Accept that you cannot control everything. Put your stress in perspective: Is it really as bad as you think?
  • Welcome humor. A good laugh goes a long way.
  • Maintain a positive attitude.
  • Get involved. Join a support network in the community or online.

SMUD (Sacramento Municipal Utility District)
The Medical Equipment Discount (MED) Rate discount program is designed to help customers who have higher electricity costs from running certain energy-intensive medical equipment. A full-time resident of your household must have a medical need. You may be eligible for up to $15 per month discount.

The MED rate covers in-home dialysis cycler, electric wheelchair, oxygen concentrator, and extraordinary heating or air-conditioning needs due to a person’s medical condition. The discharge planner can help you get an application for the program. A doctor will have to sign the form as well. The Energy Assistance Program Rate (EAPR) program is a discount for low-income households. The EAPR and the MED rate programs can be combined. This will help you get the most savings every month.

Contacting your insurance company
Every insurance company has dedicated case managers to help their patients navigate the health care system. The case management process begins when a new case is “opened”. A case manager evaluates what services are considered medically necessary, and works with different providers to ensure that the services are being given in the appropriate setting. Insurance companies plan for the ongoing medical needs in order to reduce the need for expensive emergency room visits and hospitalizations.

Contacting your social worker, if applicable
You may have been assigned a social worker by your insurance company or a state-run agency. Your social worker may have social/emotional or financial resources that they can refer you to such as relief care or Supplemental Security Income (SSI).

Women, Infants, and Children (WIC)
WIC’s mission is to protect the health of low-income women, infants, and children up to age 5 who are at nutrition risk by providing healthy food to supplement diets, information on healthy eating, and referrals to health care. Speak to your pediatrician or your social worker to see if you meet income eligibility requirements and to obtain an application.

In Home Support Services (IHSS)
If eligible, the IHSS program will help pay for services provided to your child so that your child can remain safely in your home. Disabled children are potentially eligible for IHSS. IHSS is considered an alternative to out-of-home care, such as nursing homes or board and care facilities. Speak to your social worker to see if you meet eligibility requirements and to obtain an application.

Once your application is submitted a county social worker will interview you at your home to determine your child’s eligibility and need for IHSS. The social worker will assess the types of services you need and the number of hours the county will authorize for each of these services. This assessment will include information given by you and, if appropriate, by your family, friends, physician or other licensed health care professional.

Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is a federal income supplement program funded by general tax revenues (not social security taxes). It is designed to help aged, blind, and disabled people who have little or no income. They provide cash to meet basic needs for food, clothing, and shelter. Your social worker can help you to navigate the SSI eligibility tool online and direct you through the application process.

Tracheostomy resources

UC Davis ENT Clinic
2521 Stockton Boulevard, Ste 5200
Sacramento, Ca 95817
Phone: 916-734-5400

Shiley Tracheostomy Tubes
Manufactured by Medtronic

Bivona Tracheostomy Tubes
Manufactured by Smiths Medical

Online Tracheostomy Support Groups (Facebook)

  • Tracheostomy
  • Moms of Trach Babies
  • Neck-breather’s Connection
  • Global Tracheostomy Tube Awareness
  • TrachCare
  • Kids with Vents

Early intervention program
Parents know their children better than anyone. The first three years are very important in a child's life. If a parent, family member, caregiver, or professional has a concern about a child’s development, it is best to identify the concern as soon as possible. Families whose infants or toddlers have developmental delay or disabilities, or are at risk for developmental delay or disabilities may qualify for early intervention services up to the age of 3. Regional center staff can evaluate and assess an infant or toddler to determine eligibility for Early Start.

MIND Institute
The UC Davis MIND Institute clinic provides comprehensive evidence-based assessments of children with possible neurodevelopmental disorders. The clinic providers give treatment recommendations to referring schools, agencies, doctors, and mental health clinicians. Families interested in having their children seen in our clinic should ask their primary-care doctors (PCP) to submit a referral to the UC Davis Health System's Physician Referral Center at 800-482-3284. Insurance and self-pay options are available. To learn more about the referral process, please call 916-703-0308.

Physical, Medicine, & Rehabilitation (PM&R)
The Pediatric Rehabilitation Program offers care to children with congenital and acquired neurological and musculoskeletal diseases. Patients may have disorders such as cerebral palsy, brain injury, neurologic disorders, and congenital or acquired amputation.

Pediatric Rehabilitation is provided through ambulatory clinics directed by a specialist in Pediatric Physiatry.

Population served includes patients from birth to age 21 with any of the following impairments:

  • Brain injury
  • Multiple trauma
  • Deconditioning
  • Cerebral palsy
  • Spasticity
  • Acquired amputations and limb deficiencies
  • Spinal cord injury
  • Peripheral nerve disorders (e.g. Guillian Barre)
  • Other musculoskeletal and neurological disorders

Patients who would like more information about the clinic should call 916-734-7041.

Child Health and Disability Prevention Program (CHDP)
The Child Health and Disability Prevention (CHDP) is a preventive program that delivers periodic health assessments and services to low income children and youth in California.

CHDP provides care coordination to assist families with medical appointment scheduling, transportation, and access to diagnostic and treatment services. Health assessments are provided by enrolled private doctors, local health departments, community clinics, managed care plans, and some local school districts.

Special Education
Local school districts are responsible for providing special education services to children 3 to 22 years of age.

Special Education is instruction specially designed to meet the unique needs of children who need some help with learning.

To receive special education services, an Individualized Education Program (IEP) must be written and reviewed regularly. It describes educational needs, goals, and accommodations for the student.

The step-by-step process includes a referral, an assessment, an IEP meeting, and placement.

Section 504 of the Americans with Disabilities Act requires students with disabilities be given appropriate accommodations to learn in the least restrictive environment.


The length of time needed for a tracheostomy tube depends on why the tube is needed. Tracheostomy tubes can be for a lifetime depending on your child's diagnosis and health status.

The tracheostomy tube is changed approximately 5 to 7 days after surgery by the ENT surgeon. During the first week after tube placement your will have a lot of secretions including mucous and old blood. This may line the tube and create a plug making it difficult for your child to breathe. So it is important that the tube gets changed.

The 5 to 7 day period allows for the tract between the skin and the windpipe to heal, so that the tube may be safely changed. At the time of the first tube change we will also remove all safety stitches that were placed during surgery. After adequate training, the caregiver is expected to perform all routine tracheostomy changes. You will be instructed on how often your child's tube needs to be changed.

Your child will be seen in clinic within 1 to 2 weeks after hospital discharge. You will have follow-up every 4 months for the first year. In year 2 and beyond you will be seen for follow-up every 6 months. There may be times when your child needs to be seen more frequently depending on their health status.

If your child was eating well by mouth before the tracheostomy tube placement then there is a strong chance that he or she will be able to eat my mouth after surgery. Your child will have a swallow evaluation performed by a speech therapist or the ENT nurse practitioner to make sure your child still has a “safe swallow”. If your child is at risk for liquid or food going into their lungs they will need a feeding tube.

Your child should be bathed every day. Take care to make sure that water does not enter the tracheostomy tube. Use an HME or speaking valve during bathing. Giving your child a tub bath or a sponge bath are popular options. Some parents opt to have their child stand in the shower while using a hand held showerhead. This ensures that the water stream stays below the level of the tracheostomy tube.

It is not safe for your child to swim while they have a tracheostomy tube. Using an HME, speaking valve, or tracheostomy caps are not safe to use for swimming. Your child should never be submerged under water.

  • Bleeding from the tracheostomy that has not stopped after 24 hours. *If bleeding is not well controlled, call 911.
  • Bad smell from the tracheostomy site
  • Brown or green secretions that are not clearing up throughout the day with extra hydration and humidity
  • If you perform a tracheostomy tube change and only the "size smaller" will fit
  • If you notice granulation tissue at the stoma and you are concerned that it may affect your ability to change the tracheostomy tube
  • If your child has difficulty breathing, call 911

*For all other medical concerns, call your pediatrician or specialist if appropriate.