Rigid External Distraction survival
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Basic Tips
Food and Diet
  • Hair: If you've got long hair, your surgeon will probably have you put your hair into pigtail braids starting behind the scar line (if you already have one from previous surgeries) to hold your hair back during the surgery. This can make it easier for them to keep most of your hair. Make sure you ask the surgeon about the hair issue, because it's different for everyone.  They often have to shave off a narrow strip around the incision to keep it clean, but they usually don't need to shave everything.  If they are able keep most of your hair, they will probably goop it up with some beta dyne (disinfectant smelly stuff)  to hold it back.  Since you can't wash your hair for about a week after surgery, it's kind of gross having pasty/goopy beta dyne-covered hair for a while, but the best thing to do is to LEAVE THE BRAIDS IN until you can wash your hair. I cannot emphasize that enough to all you girls!  As tempting as it is, do not take out your braids until you're allowed to wash your hair unless the braids are seriously hurting you.  This way, the goop stays within the braid.  I have had surgeries were the braids hurt, so I took them out anyway, but trust me, it's so much worse because then the betadyne gets everywhere and it's just gross.  You don't need anything making you feel grosser while you're recovery, so trust me and LEAVE THEM IN!!! 

  • Baths: With the RED on, you take showers, so you'll have to take shallow baths. Shampooing is a two-person task. You can really only wash the end of your hair. Do not massage your scalp. This could open the door for scalp infections near the pin sites.  Be super careful, and have someone help you with the shampooing.  I know that having a parent help you with a bath is weird if you're over age five, but it's way safer.  Considering what you've been through already, having a parent give you a bath is not that bad.

  • Pin Site Care: Another issue is the pin sites. These are the places where the screws go into your head. The pin sites can become infected if they are not taken care of properly. Everyday my dad would clean the pin sites with Q-tips (the best kind was the kind with the long handle), benzol peroxide, and/or Vaseline. This kept the pin sites from getting infected, and the ones that were already infected were kept under control.  This also limited scaring afterward.  It was a tedious task, but it was worth it.

  • Nose, um, stuff: After the first surgery, I probably used about 50 boxes of Kleenex in the hospital.  After such a major surgery, there is a lot of discharge that somehow finds it's way out your nose. Don't blow hard, just get out whatever comes out (I know, I know, gross). You might even use one of the bulb syringes that people use to get boogers out of babies' noses.  It can be very uncomfortable feeling stuffed up, but it can only get better. Okay, on to another subject...

  • Dental Health: This is a nearly impossible task with the RED dominating most of your mouth.  You might also find that you can't open your mouth as wide after surgery because those muscles are under stress.  Make sure to use a baby toothbrush, so you don't have to hold your mouth open as wide.  The hospital gave me a special mouthwash from the hospital, but I'm not sure how they expected me to use it.  I ended up just squirting it in with a syringe. This worked... sort of.   Ask the hospital for as many syringes as you want, they should let you keep them.  Another thing that helped was a water pick (set on low).

Handling the Public