If you believe your child has reflux you should seek an appointment with a pediatric gastroenterologist as soon as possible. Consider getting a videofluoroscopic swallow study (VFSS) modified barium swallow study (MBS), or endoscopy to ensure that your infant does not aspirate from her reflux. Explore with your child’s pediatrician and specialists any potential underlying […]
If your child has frequent blood draws or a medical condition that can require STAT blood draws, ask your child’s pediatrician or medical specialist for a standing order. In some cases, it may prove helpful to have two standing orders on hand – a short order (to cover the basics) and a long order (for […]
Keep yearly files for medical bills, insurance statements (explanation of benefits) and flexible spending statements. SAVE EVERYTHING! Know your insurance coverage. Be aware of any annual or lifetime caps on medical coverage. Do not automatically pay a medical bill that is sent to you. If the bill is more than you were expecting (as per […]
Contact your State’s Early Intervention Program as soon as you bring your baby home from the NICU. These programs offer physical, occupational, and speech therapists (who can help with feeding problems) at little to no cost to you (depending on your ability to pay). These therapists will come to your home to treat your child, […]
Keep a supply of children’s and adult masks, urine collection containers, and prep towelettes/wipes in your home. In the event your child has to go to the Emergency Room, call ahead. Tell them your child is immunosuppressed and cannot wait in the lobby. They will have an exam room waiting and should take you directly […]
Rest assured that your child’s kidney doctor (nephrologist) and dialysis nurse will provide you with extensive training before you begin dialysis at home. If at all possible, have two adults available for the training. Find comfort in the fact that a dialysis nurse and/or nephrologist will be available to you 24/7, should any problems arise. […]
You have the right to request your child’s medical records for your own use. Make your request for medical records far in advance of any meeting or appointment where you might need them. It can take weeks, if not months for a facility to process a request. Submit your request in writing, and save a […]
Keep in mind that you are your child’s best advocate. Don’t be afraid to question your child’s medical providers or seek second or third opinions when you feel conflicted about the medical advice you are receiving. Keep in mind that medicine is not an exact science. It is a “practice,” which requires a series of […]
Know that you are your child’s best advocate and only voice. Keep in mind that medicine is not an exact science. It is a “practice,” which requires a series of educated guesses, trial and errors. The medical staff, while clearly experts in their respective fields, are only human and can make mistakes. Establish a respectful […]
