Your Child's Experience with the Pulmonary Hypoplasia Program

Your Child's Experience with the Pulmonary Hypoplasia Program

It can be helpful for both parents and children to know what to expect when going in to a doctor's appointment, especially when you might see multiple providers on the same day, like during a visit to the Pulmonary Hypoplasia Program (PHP).

No one can explain something better than those who have gone through it firsthand. Here, fellow PHP parents offer advice to help you prepare for your day of appointments. These tips and advice were collected straight from experienced PHP parents Elisabeth, Lora and Meredith, whose children are being treated by the program.

Preparing for your visit

“A day in the PHP actually starts a few months before your appointment.” -- Elisabeth, mom to Charlotte

  1. If possible, try to schedule your appointment for a day you can bring another adult with you. It helps with keeping your child/children occupied and it’s always good for two sets of ears to hear the same information.
  2. Have an appointment itinerary. Someone from the program will call you to give you the schedule for your day. Write it down or ask to have a copy mailed to you so that you know your appointment times and locations, names of your specialists, and any special instructions (e.g., arrive 15 minutes early).
  3. Call ahead to see if your child will be receiving any X-rays. Scheduling the X-ray before your appointment with your doctor will allow you to discuss the results.
  4. Make a list of questions! Often PHP kids have a lot going on and it's easy to forget something. Make the absolute most of the time you have with your child's doctor by jotting down any questions or concerns you have in the weeks leading up to your appointment.
  5. Make sure you have referrals if your health insurance company requires them.
  6. Plan your departure time. Add an extra 15-30 minutes to be on the safe side, especially during morning rush hour, and make a short-list of things to do in the morning so you don’t forget before you leave.
  7. You should expect the scheduled appointments to take most of the day, so prepare for a long day. Make sure your child goes to bed on time and gets a good night sleep, especially if you have an early departure time.
  8. If you live within close proximity to the hospital, consider breaking up your appointments and only seeing two specialists per visit, or one specialist plus blood work or echocardiogram.

Staying organized

“We have found the CHOP binder to be very helpful to keep all of Carter's records organized. If there is ever an emergency it's easy to grab and you have any information a doctor might need.” -- Lora, whose 19-month-old son Carter is treated by the program

  1. It’s helpful to bring a binder in which you can keep your child’s current medications, previous surgery information, and medical history. This way you have all of your child’s medical information in one place for easy access. Care binders may be obtained in the PHP clinic.
  2. The night before your appointment, review your schedule and the question list you’ve created. Make any updates to the list and make sure you bring it with you.
  3. Keep the print-outs that each provider gives you at the end of the visit. They will be a good reference when you get home.

What to bring

“Be prepared to spend the entire day at the hospital. You may not have time to eat lunch; so make sure you bring snacks for parents, child, and siblings.” -- Meredith, mom of son Reid

  1. Dress your child in easy-to-remove clothes. Avoid overalls, multiple layers, tough buttons or snaps. Slip-on shoes are very helpful.
  2. Pack snacks and drinks for you and your child. PHP days are long and even when there is a scheduled lunch break, it is often spent walking to and registering for your child's next appointment. Don't forget to pack something for yourself too!
  3. Bring any formula, supplies or medication your child may need – bring enough for the entire day, including your drive home. If your child is tube fed, bring a cooler bag with bottles and an ice pack. There are sinks in the patient rooms so you can rinse the feeding bag if necessary.
  4. Don’t forget to pack diapers and wipes (if applicable).
  5. Bring a change of clothes for younger children.
  6. Select some of your child’s favorite books, toys or games to prevent boredom during down time while you wait for doctors.
  7. Bring a stroller, especially if your child might be able to nap in it.
  8. Bring a notebook to take notes (especially if you are seeing more than one specialist in a visit).
  9. On the morning of your appointment, pack any last minute items (refrigerated items, medical supplies).

Day of visit

The Pulmonary Hypoplasia Program is located within the General Surgery Clinic on the 9th floor of the Buerger Center for Advanced Pediatric Care on CHOP's Main Campus.

Appointments in the PHP are designed to allow for visits with multiple specialists in one location. In most cases, any necessary testing can also be completed on the day of your appointment. Each specialty is located in close proximity and the PHP team will be there to help you get to where you need to be.

  1. Plan a little extra time for parking and checking in. In the parking garage, the “A” level is always more crowded than the “B” level. It is often worth it to just go straight down to the “B” level, rather than driving around “A” looking for a space.
  2. Make sure you bring your parking ticket into the hospital with you for validation.
  3. If it’s your first time visiting the hospital, make sure you have your current insurance cards with you. The receptionist will also check your demographic info every visit for any changes. You may need to check in and register separately at some appointments (e.g. cardiology, audiology, neonatology/behavioral health).
  4. Your child might not have to be re-weighed or measured after the first appointment. Keep the sheet or remind later appointments that the vitals have already been completed.
  5. Refer to your question list throughout the day and jot down any answers or reminders.
  6. Encourage naps if possible. Your child, especially a young child used to napping, will likely get tired during the day. Try pushing him or her in the stroller and shutting off the lights in the exam room while waiting for a provider. If you have two adults, one can push the child in a quiet part of the hallway, while the other waits to be called. Any bit of down time can help perk a child up for the rest of the day.
  7. Make use of the cafeteria on the first floor of the main hospital, where you can sit down to eat at a table and get some food and drinks, or use the microwaves to heat up food you brought from home.

Tests and procedures

Some of the tests and procedures that may be recommended in the diagnosis, management and follow-up of patients within the Pulmonary Hypoplasia Program:

Developmental assessments

Developmental assessments include an evaluation with a psychologist who specializes in early childhood development, and take place during Neonatology/Behavioral Health appointments. From infancy to age 2, the assessment examines how your child is progressing in terms of early developmental milestones. As your child nears school age, we look at the skills and abilities that will help him as he enters school.

These assessments help you track your child’s progress and offer recommended activities that support his development and transitions as he grows. Developmental milestones and abilities we look for include:

  • Cognitive development — playing and problem solving, ability to understand verbal and visual information
  • Language development — ability to listen, understand and communicate
  • Motor development — progressing with skills like rolling, sitting, crawling and walking, and fine motor development, including using hands to play, drawing and pre-writing skills
  • Pre-academic skills — early reading and mathematics skills
  • Social development — interest and engagement with other people, relating to others and developing friendships
  • Emotional development — range of emotions, learning to calm down and coping skills
  • Behavioral development — learning to imitate others, respond to limits, cooperate, pay attention and follow directions

Follow-up schedule for PHP

Appointment schedules are based on your child's needs but typically occur at 6 months of age, 1 year, 2 years, 4 1/2 to 5 years, 6 years and then every two years thereafter.

For timing and a breakdown of specialists your child will likely see during each follow-up visit, you can download a follow-up appointment schedule.