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The Complete RED Survival Guide

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Basic Tips for Surviving the RED


* Always keep a working list of questions.  Any time you think of a  question related to your surgery, no matter how trivial you may think it is, add it to the list.  Take the list of questions with you to your appointments and write down the answers. We bombarded my surgeon with questions every time we saw him, and he was always willing to answer us, and the answers always proved useful.  This will reduce the stress of trying to remember all of the questions during the appointment. 

SAMPLE QUESTIONS: ~ What will be the length of hospitalization? ~ Will a ventilator / breathing tube be necessary after surgery? If so, how long? ~ How long after hospitalization will turning screws begin? ~ How fast are you going to turn (mm/day)? ~ For how many days will the screws be turned? ~ Will any hair need to be shaved? ~

* Make arrangements at school and at work and make sure everyone understands at least a little bit about the procedure.  Don't allow your teachers to even think that make-up work is something they can expect before the entire process is over.  I ended up missing the entire last quarter of 7th grade.  Consider talking to school counselors about the different options that exist for missing prolonged periods of school.  

* Brief your trusted friends on what's going on.  They will support you and will appreciate your opening up to them about this.  Before I left, apparently someone thought I was going to have plastic surgery!  As long as some of your friends know the truth about where your going, wacky rumors like that shouldn't get too far.  Also give your friends the contact information on where you will be staying after hospitalization.  My friends were constantly sending me cards to the Ronald McDonald House while I recovered, the cards offered encouragement during that time. 

* Make housing arrangements far in advance (if you don't live near the medical center you will be using).  We stayed at the Ronald McDonald House.  Check online or through a social worker about staying at a Ronald McDonald House or one of the many other shelters for young hospital patients and their families.  In most all cases, you will need the referral of a social worker to be admitted into one of these shelters.  

* Make arrangements for siblings.  Please, please, please, do not bring young siblings into the hospital on the day of the operation.  It is a bother not only to your patient (who will probably be nervous and stressed enough) but to other patients in the hospital as well.  See if the younger ones can stay with other family or friends.    

* Relax and do something fun the day before the surgery to take off the stress.  Worrying won't help anything (though that is 100 times more easily said than done). Just pray, and leave the rest up to God.

* Eat as much chewy food as you want before the surgery.  After the surgery, you won't be allowed to use those choppers much, so use them out now!

* Try to get an early-morning surgery if possible since you will not be allowed to eat anything the day of the surgery.  If your surgery is in the afternoon, then stay up late the night before and eat a snack.  Hopefully, this will allow you to sleep in closer to the time of the surgery, be less hungry, and have less time to worry.


 It's interesting that the dreaded operation part is the part that we stress over the most, but then it comes, you go to sleep, then you wake up!  I know, I know, the last few minutes right before an operation can be panicky.  You're mom is crying, you're now crying, the nurse is trying to find a vein to put the IV in, you're hungry, random people walk around with blue masks as if they're trying to hide their identity, and that awful hospital gown you have to wear is a humiliating piece of cloth that does not sheild the coldness of the room at all!  I know it's tough.  The good thing is that this part only lasts a little while.  Just trust God, He'll take care of everything, don't worry.  Before you know it, you'll wake up! 

Parents: Stay close by, but don't worry too much. Stay near a phone, because they may give you hourly updates.  Try to occupy your mind a bit by doing something, (my friend's mom made sushi while her daughter had the RED surgery). Take comfort in the fact that God is in the operating room with your baby.


* When you first wake up, relax.  You may have a breathing tube in (I hate those, but the best way to work with it is to relax).  Parents: stay nearby.  Communication is limited to improvised sign language when a ventilator is involved.  I remember being really hot when I woke up.  Fortunately, my mom was sleeping within taping distance (I highly recomend that all parents do the same). 

* Parents: If your patient has a latex allergy (like most of us seem to get), make sure all the nurses know this.  Either make or get signs that clearly, in big letters, say LATEX ALLERGY for the room door and above the bed.

* When you feel up to it, eat something.  This will help you in recovery and also allow them to switch your medications (for me it was from the drowsying morphine to a strong perscription Tylonel).  If you are unable to eat, you may need a feeding tube.  I didn't have one, but I've heard they're not a problem once they're put in.

* Be as honest as you can about your pain.  I know a lot of us like to suck it up and automatically answer the question "how are you feeling?" with "fine."  If you're not fine, say so.  They have this new system where they'll show you cartoon faces that represent the different levels of pain.  Don't be afraid to point to the crying face.  What you tell them is the only thing they have to help them help you.

* When you feel a little more conscious, send your parents out to the playroom to see if any forms of entertainment in there.  Many hospitals have videos and books (although, you probably won't feel like reading). 

* Don't look in the mirror!  I don't want to scare anyone, but after a surgery like this, you will not look that hot.  In fact, you might be a different color altogether.  It'll all get better real fast though.  Just be patient and wait.  

* Don't undo your braids.  If they didn't cut off your hair, it will probably have some betadyne in it which makes your hair kind of crunchy like hair gel.  It's best if you keep your hair contained (even if you undo the braids or whatever you went in with), otherwise, the betadyne feels rather gross.  

* I remember just feeling gross and nasty.  There's really no way not to feel this way, so your best bet is to try to distract yourself with movies, jokes, any mail you get, and sleeping.  Remember that you will get out eventually.  Then think about what a great movie your life would make...after all, only a select few of us get to experience this stuff (how nice, right?)    

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2004, Lia Burton                          Basic Tips