Lurie Children's Hospital of Chicago | Pediatric Medicine



General guidelines for Parents, Pediatricians, and referring cardiologists after discharge from newborn surgery

Lurie Children’s Hospital HeArT Clinic

The HeArT (High Acuity Transition) Clinic has the mission of providing close follow-up care after discharge from the hospital as your child transitions from the inpatient to the outpatient setting. The HeArT Clinic will assist with the frequent outpatient visits needed until your child is ready to transition to a primary cardiologist.

Location and Times of Clinic:

Monday 8AM-9:30 3rd floor (West side check in)

Thursday 1:00PM-4PM 3rd floor (West side check in)

Attending Cardiologists:

Kiona Allen, MD

John Costello, MD

Advanced Practice Nurses:

Michelle Steltzer, APN (Primary NP)

Carrie Alden, APN

Julie Creaden, APN

Questions or concerns following initial discharge from the initial discharge from the newborn surgery should be directed to the team that discharged your child.

Scheduling an appointment or contacting your provider:

Appointments will be scheduled upon discharge from the hospital and subsequent appointments will be scheduled as needed based on your child’s status.

➢ For appointment questions, please call Silvana Illescas or Jessica Jimenez at (312)-227-4240

➢ For non-urgent clinical questions during the day (Monday through Friday), please call (312)-227-4000 and ask to page Michelle Steltzer. You can leave a non-urgent VM at (312)-227-4402.

➢ After hours please urgent matters please call (312)-227-4000, ask the operator to page the cardiology fellow on call and share your child’s cardiac passport history.

Communications with Referring Cardiologist and Primary Care team:

Letters will be sent on a weekly/biweekly basis to referring cardiologist and pediatrician.

We encourage families to use Mychart. to access your child’s electronic health records. This also allows you to communicate to your team, access test results, request prescription appointments, and view appointments.

We encourage families to use Care Everywhere to provide a more seamless sharing of communications when multiple providers/institutions are being utilized. The platform allows flow of electronic health records across state and national borders.

Home Surveillance Monitoring Program (HMP) & what parents can expect?

Lurie Children's Hospital’s Home Surveillance Monitoring Program (HMP) was started to support you during this challenging time. Research has demonstrated through the years that close follow up and daily monitoring of saturations, weights, and intake has improved mortality during the interstage period. You will be given detailed guidelines and goals for your baby’s growth and oxygen saturation levels, and will be supplied with a pulse oximeter (a painless sensor device that measures oxygen levels in the blood) and baby digital scale and a notebook to record your baby’s daily information. A one page health care dashboard will also be provided for you to facilitate quick and prompt communication to any team of your child’s health care needs.

Supporting Research:

● Home surveillance program prevents interstage mortality after the Norwood procedure. Ghanayem, Hoffman, Mussatto, et al. The Journal of Thoracic and Cardiovascular Surgery 2003: (126); 5, 1367-75.

● Nutrition algorithms for infants with hypoplastic left heart syndrome; Birth through the first interstage period. Slicker, Hehir, Morsley, et al. Congenital Heart Disease 2013; (8); 2, 89-102.

● Improvement in interstage survival in a national pediatric cardiology learning network. Anderson, Beekman, Kugler, et al. Circ Cardiovasc Qual Outcomes 2015; 1-8.

We will give you instructions, tools, and “red flags” to look out for so that you can call your treatment team if you identify a possible problem or concern. It may seem at first a little overwhelming but very quickly will become a routine of care that is not burdensome. By doing this, it allows you as primary care managers in the home to have tools to understand subtle changes, provide reassurance, and peace of mind when things are going as planned. In addition, you will have weekly phone (or email if you prefer) contact with a nurse practitioner who will review your baby’s health with you. Our team will discuss the HMP with you in detail before your baby goes home. We will work closely with your local caregivers, your Lurie Children's Hospital cardiology team (and referring if needed), and other specialists involved in your child’s care.

1. Parents have been supplied with a pulse oximeter and a baby scale and shown how to use these two machines. They have been instructed to check their child’s saturations daily (and if concerned) and to weigh the baby daily.

2. Parents are asked to record weights, oxygen saturations and general observations in a daily log and to share this log with the pediatrician/cardiologist during follow-up visits.

3. Parents are asked to call their provider if their child is experiencing nausea/vomiting/diarrhea, is not having sufficient wet diapers, and/or is febrile.

4. Weekly outreach will be made from a designated pediatric nurse practitioner at Lurie Children’s Hospital of Chicago. For patients followed by cardiologists outside of the Lurie system, patients will be contacted weekly and if concerns arise, the referring cardiologist notified.

As you are learning the key components of care for your baby around discharge, we want to take this moment to say CONGRATULATIONS!

You have made it to a big milestone in your baby’s life.

This was no easy task for you as parents and encourage you to celebrate your resilience.

Key points for parents to consider before going home:

1. It will take some time to adjust from being in the hospital for many weeks for you all. Please take your time, be patient with yourselves, and find ways to celebrate your newest member being home with you.

2. Maximize the health of your family and care provider team at home

a. Use good hand washing and keep all visitors away who have any evidence of cold or flu viruses.

b. Immunize all family members and have flu shots given to all members in close contact that are >6 months of age.

c. Make sure you keep up with the monthly Synagis injections during the winter months. It is very important for your baby’s health.

d. Keep up with good healthy food and fluid choices, sleep when the baby sleeps, keep up with frequent pumping if using breast milk, and enjoy being together as a family.

3. Remind family members and visitors that your baby had open heart surgery and the sternum is not fully healed. Encourage “scooping” behind the shoulders and buttocks as the best method to pick up, hold, and transfer your baby to the crib, bouncy seat, car seat, etc. It can take 6-8 weeks to recover and up to 3 months to completely heal.

4. Reach out to those family and friends to help provide meals and other support like cleaning, laundry, etc so that you can stay focused on getting used to your new normal after hospital discharge.

5. If something doesn’t make sense to you, trust your gut and ask for clarification. Call your pediatrician or cardiology team. We are always here if needed. There is no such thing as a silly question.

Communication with your pediatrician about HMP

The cardiac team is pleased to have your office on board with the collaborative care of this fragile patient population during the interstage period. What it means for providers in the practice is being able to share and transfer care promptly when any red flags arise in the home.

1. Assist with normal and sick visits: Some families reside at great distances from their cardiology care team and you may be the first point of care for families should a concern arise. Being willing and able to add this patient into your clinic within hours of an initial contact is incredibly helpful to assist in any care management adjustments that need to happen.

2. Continue normal developmental assessments to assess and guide the patient and family if any concerns arise. The cardiac neurodevelopmental team is a as resource should concerns arise. Please reach out to your cardiology team if needed. Families have a first appointment scheduled before initial discharge with a planned schedule through infancy and support through school-age years.

3. Reinforcing normal immunizations, influenza, and Synagis to promote optimal health. In some cases, it may be recommended to hold off or delay immunizations if the child is unable to meet full maintenance goal feedings for hydration.

a. Immunizations: Immunizations are given to infants and children to protect them from serious illnesses such as diptheria, hepatitis, whooping cough, polio and others. The timely use of immunizations in children with heart disease is important for health maintenance.

i. For the most part, the usual guidelines apply and children with heart problems get the same immunizations at the same time as other children. It is best to postpone routine immunizations in children who have a fever or a severe respiratory infection.

ii. Children who are having heart surgery should not have the measles-mumps-rubella immunization within 10 days of their surgery and it is best to avoid all immunizations the week before and for 4-6 weeks after heart surgery.

b. RSV, prevention: Infants and Children ................
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