The Complete RED Survival Guide

My History
About RED
Basic Tips
RED Survivors
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Even with RED, you have to be mindful of hygiene...


If you've got long hair, your surgeon will probably have you put your hair into pigtail braids starting behind the scarline (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. If they are able keep most of your hair, they will probably goop it up with some betadyne (disinfectant smelly stuff)  to hold it back. It wouldn't be so bad, except that you're not allowed to wash your hair for about a week (again, talk to your surgeon, because everyone's case is different). It's kind of gross to have pasty hair for a few days, 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 uncomfortable to have pasty betadyne-covered locks rubbing your neck and scalp. 


With the RED on, you can't be taking 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.  Try to have someone help you with the shampooing.  I know that having a parent help you with a bath is weird, but it's generally less dangerous (assuming this parent is patient and gentle) since they can see where the pins are. 

Pin Site Care:

Another issue is the pin sites. These are the places where the screws go into your head (gross, I know). The pin sites can become infected if they are not taken care of properly. Every day we would clean my pin sites with Q-tips (the best kind was the kind with the long handle), benzol peroxide, and/or vasoline. This kept the pin sites from getting infected. 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 that first surgery, I probably used about 50 boxes of kleenex in the hospital. Seriously, I had about a 1 x 2 x 3 foot trashcan that probably overflowed two or three times.  After surgery on your head, there is usually 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). It can be very uncomfortable feeling stuffed up, but after a few days, I started clearing up and things got better. Okay, on to another subject...

Dental Health:

This is a nearly impossible task with the RED dominating most of your mouth. That's why I had to use a Sesame Street baby toothbrush. I also had to use a special mouthwash from the hospital. I'm not sure how they expected me to use it, since I couldn't shut my mouth all the way, but 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).