No one likes being in the hospital, but when your child has a diagnosis of CDKL5 Deficiency Disorder, hospitalizations are a part of life. Some of the most challenging hospitalizations are for respiratory illness. Recently, Marissa was in the hospital for two weeks with her son for the flu. In this episode, hear all about their stay as well as about how we prepare for hospital stays, tips and tricks, a candid discussion about the challenges, and how sometimes life looks different upon discharge.

SHOW NOTES

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MENTIONED IN THE EPISODE:

• PICU

• Common Respiratory Illnesses

• Pediatric Intubation Video

• Secretions and Suctioning Information

RESOURCES:

• A Tiger Mom’s Guide for Sudden Hospitalization

• How to Pack a Caregiver Ready Bag