After the Surgery

After Jeune's Syndrome Surgery

Instructions and education on post-surgery care needs for the child will be provided by our knowledgeable staff. They will prepare the patient's family for his or her return, whether it be back home, or to their hometown hospital. Patients who come on ventilators from other hospitals can be returned within a week to their own hospitals where they can complete their recoveries.

Our nurses, social workers, case managers and your child's physician team are always available to answer any questions you might have about your child's long-term care. Our discharge planning services will help you with resources you will need once you are home with your child. These items include:

  • Home nursing care
  • Equipment companies
  • Supplies
  • Ventilators
  • Follow-up appointments
  • Coordinating with the staff at your hometown hospital in preparation for your child's return to their care
  • The transfer back to your hometown hospital, as well as most follow-up treatments, will also be coordinated with the physician who referred you to us.

In the Come to Children's section of our Jeune's information site, we have compiled many helpful resources for the families of our patients while they are here. Here you will find everything from hospital admission and billing information, to maps, transportation and local lodging information.

NEW! Recommendations for airway surveillance 

Jeune Syndrome patients with tracheostomy: Recommendations for airway surveillance

The Jeune Center of Nationwide Children's Hospital has noted an unusually high (25%) incidence of tracheal granulomata in our list of active patients.  This is considerably higher than the incidence of granulomata in patients with chronic tracheostomies for other reasons.  The reason for this high incidence is unclear at this time, but may be related to the underlying disease.  Because of the significant risk this situation presents, we are recommending the following guidelines for airway evaluation in this group of patients:

  • Flexible nasolaryngoscopy and bronchoscopy should be carried out on these patients every 3-6 months for surveillance purposes.
  • Flexible nasolaryngoscopy and bronchoscopy should be carried out immediately for the following indications:
    • Bleeding from the tracheostomy
    • Any new decrease in vocalization
    • Visible granulation tissue externally around the stoma
    • Any decrease in toleration of the regular tracheostomy changes
    • Parental concern for any other new signs of deterioration or decrease in overall airway stability