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Safety TipsThese tips and ideas come from other parents of PRS children that have been there and done that. In no way are they meant to go against a doctors orders or opinions. We suggest that you always check with your physician if there is any questions that may arise.
Car Safety Tips
Do not use a T bar type car seat with a trached child. In case you stop fast, in
car accident, or they fall asleep and their heads fall forward. Avoids the trach
hitting the bar.
Feeding Safety Tips
Feeding a baby head elevated to at least 30 degrees can help with aspirating and
reflux. Using an infant car seat or for older children a boppy pillow on a
pillow will give this elevation and still allow them to hold their own bottle or
free up your hands for tube feeding. Note: to elevate the head of the bed place
a pillow or two under the mattress.
G-Tube Safety TipsFor children that have G-tubes (Mic-Keys) have a back up set at home always. Carry a Foley catheter in the diaper bag for those emergencies to hold the stoma open until you can replace the Mic-key.
Home Safety TipsIn Pompton Plains, NJ, the department of health will give you a sticker for your front door called "FILE OF LIFE" it will alert emergency personnel that on the refrigerator you keep IMPORTANT LIFE information. Check your local Health Dept. if they have something similar.
Some Medical Supply companies give out RED Alert cards that say "Oxygen In Use. No open flames, No smoking, matches, or candles to be used." Post this on your front door even if you do not use oxygen daily. It will alert all those who enter. Also, post one on the door of the room where the oxygen is mainly used and extra canisters are stored to alert the fire department in case of a fire.
Always contact your local electric company, phone company, police, fire dept, and local ambulance service. Alert them that you have a special needs child at home so that they will put you on their priority list in case of emergencies and power outages.
Note: Some hospitals may have form letters for you to fill in and send out, check with them before discharge. In some cases that you may not be able to pay your monthly utility bills this notice may keep them from turning off your power or telephone for emergency use.
Obtain an apnea monitor before being discharged if at all possible. Makes for less sleepless nights for parents.
Have a flashlight bedside if your child sleeps without any lights on. Easier to see what buttons you are pushing on the equipment without turning on a light.
Trach Safety TipsFor children who are trached always keep a downsized and current size trach bedside and in the diaper bag. Mark the smaller one with a red "X" to aid in an emergency.
Obtain a 12v plug for your portable suction machine that plugs into the cigarette lighter. Makes trips easier and keeps your suction machine battery charged while you are driving.
Get Infant CPR training before leaving the hospital.
Miscellaneous Safety TipsYou can make up a little emergency bag that has the extra supplies you may need to take on walks that is not quite as big as the diaper bag. Using Posey restraints or similar products to secure tubing from mist collar or ventilators can help child from getting tangled in the tubing at night.
Bells tied on a child's shoes can alert you if the child is in distressed as most children when upset kick their feet. Can be helpful with a child that is trached and still not making sounds. Also, alerts you to where the toddler may be in the house and what they are getting into when they are on the go.
Prone positioning or side sleeping is safest without surgical intervention, while the child's tongue is still falling back or blocking the airway.
Again, we do not want you to try any of these ideas stated here if they go against your physicians orders. If you have any concerns or questions please contact your physician.
Pierre Robin Network
Quincy, IL 62305
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