Complex Corner: This is the first in a series of blogs specifically written for parents of children who have complex conditions that require a variety of medical specialists.
By Ruchi Kaushik, MD, MPH
Assistant Professor, Pediatrics
Director, ComP-CaN (Comprehensive Peds for Complex Needs)
Baylor College of Medicine
Taking a newborn home from the hospital can be anxiety-provoking for most families, so taking a medically fragile infant or child home after being in the hospital for several weeks is obviously daunting.
Families meet a variety of doctors, nurses, physical/occupational/speech therapists, respiratory staff, case managers, and social workers – it is impossible to remember everyone’s names, much less what they just advised you to do before leaving the room. That said, I often tell caregivers that hospital staff have done a superb job of saving a child’s life; our next task, as a team, is to prepare a child for school. In simple terms, going home is one transition to a new normal, until the next transition.
Here are a few tips to help you be prepared:
- Stay organized Keep a binder, hard copy or electronic, so all the information you need is easily accessible. Create tabs for a calendar (with all appointments written), hospital discharge summaries, recent notes from your last pediatrician or sub-specialty visits, important laboratory or radiology results (e.g. most recent swallow study result, most recent sleep study result, etc.), medication lists, and other relevant information you would like health care providers to know (e.g. “My child does not like it when you…”).
- Know your peeps Understanding what constitutes a medical problem for your child and what is within the realm of normal may take several weeks to months (and almost as soon as you have figured it out, your child will do something new!). As a result, doctors tend to encourage you to call with any concerns and rightly so. Before going home, hospital staff will provide training to ensure that at least two caregivers in the home receive training to prepare to handle a medical emergency. Also, be sure to learn which specialty you should call for which symptoms or issues. Have a handy list of physician names, their specialties, and their phone numbers. Of course, in the case of medical emergency, call 911 immediately.
- Ask for help Medically fragile children will often qualify for private duty nursing (PDN) care within the home. PDN care is subject to approval by insurance companies and the number of hours per week approved are dependent upon the needs of your child. These children often have developmental disabilities that require physical, occupational, and speech therapies and dependence upon technology and equipment for feeding or respiratory care. Know the names of your nursing, therapy, and durable medical equipment (DME) agencies and have their contact information easily available. Be sure to share this information with your pediatrician and subspecialists so that the agencies can send necessary documents to the appropriate clinics.
- Make a list Once home, you may begin to have questions you didn’t have before discharge. Write these concerns down in a list so you do not forget to ask them when you see the doctor.
- Advocate! Advocate! Advocate! Your health care providers want to help. Do not hesitate to ask questions and share your concerns. Caring for a medically fragile child is a team effort with your child at the center of that team. You absolutely have the right to take part in making decisions for your child and should feel comfortable advocating for him with all of your doctors.
To find out if your child is eligible to see a complex care pediatrician at The Children’s Hospital of San Antonio, please call 210.704.4966 and visit our web page by clicking here.