Ventilator Clinic

We see children who require ventilation through a tracheostomy tube for all or part of the day. We see children who have bronchopulmonary dysplasia, subglottic stenosis, restrictive lung disease, tracheobronchomalacia, muscular weakness or low muscle tone, and many more diagnoses.

After you have been discharged from the hospital, your child’s first visit with our clinic will be a virtual telehealth visit. This allows us to see your child’s home setup, address equipment concerns, and discuss any issues that have come up since your discharge.

We will see your child about 1 month after their initial discharge. After that, we typically will see your child about every 3 to 4 months. As your child grows and becomes more stable, we eventually may stretch out the frequency to every 6 months or even longer. The frequency of visits depends on how your child is doing and how many changes we are making to their plan of care. Depending on your child’s individual needs and your preference, we may be able to alternate in-person visits with virtual visits. In general, we need to see your child in-person at least every other visit.

Your child will see a doctor (pulmonologist) who specializes in caring for children who require a ventilator. Your child will also see other healthcare providers including a nurse, respiratory therapist, and social worker.

Clinic visit time depends on your child’s current medical needs. Visits, both in person and virtual visits, can take 45 minutes to 1 hour or longer.

We might ask you to get other tests (labs, chest X-rays, etc.) done before or after your Ventilator Clinic visit. Added tests can make for a long day. Feel free to bring snacks, formula or juice, books and toys.

To learn more about how to prepare for a clinic visit, and find out about hospital amenities and family support services, visit seattlechildrens.org/patients-families.

1. About 1 week before your clinic visit, a nurse will call to ask about how your child has been doing recently. The nurse will ask questions about your child's breathing, feeding, home nursing support, equipment, and therapies your child is receiving. This current information will help us to make your clinic visit go more quickly.
2. When it is time for your Ventilator Clinic visit to start, a medical assistant will come meet you and your child. Once in the exam room, we will take your child's height, weight, and vital signs. They will also review your child’s current medications. If you are being seen virtually, a medical assistant will greet you and review your child’s medications.
3. We will complete our TrachSafe checklist before or during the clinic visit. This form lets us know if there have been any airway or equipment emergencies that need our attention.
4. The respiratory therapist will look at your child’s ventilator and confirm that the ordered settings match what is on the ventilator. We may make changes or adjustments to the ventilator during the visit.
5. Our team of healthcare providers will see your child. Based on their recommendations, there may be other tests or referrals that need to be done right away. Some tests or referrals may be scheduled for another time.
6. We will give you a written copy of what was talked about during your Ventilator Clinic visit called an after-visit summary and send you a digital copy through MyChart. We will also give you a written and signed copy of any changes that have been made to your child’s plan of care (changes to ventilator settings, nursing care, medicines and nutrition plan). We will let your child’s nursing agency and equipment companies know of any changes.

• Your child’s “go-bag.”
• Your child’s medical equipment: ventilator / BiPAP / CPAP machine, pulse oximetry, suction, cough assist machine (if you have one) and oxygen. Please bring the ventilator even if your child is only using it at night. It is helpful for our team to look at the ventilator and make changes during the appointment if needed.
• Any questions and concerns from your home nursing agency or equipment companies.
• Any forms that might need to be signed by our providers (school forms, orders, etc.).
• List of pulmonary medicines that need refills.