With Recessive Dystrophic EB, some type of surgery or procedure is inevitable, whether it be a G-tube placement, hand surgery to release fingers, esophageal dilatation, dental surgery, blood draws, transfusions, etc. It all can be scary especially when most doctors and nurses do not know the specific things you can and can not do when treating an EB patient. So I've made this page as a sort of checklist to remember some things to tell the doctors, and suggestions on how to do things in an EB friendly way without causing trauma to the skin.
Before Drawing Blood - First make sure the person drawing the blood knows that absolutely no adhesive can be used on the skin so this means no band-aid afterwards. Also tell them to be very gentle when touching the skin because the skin can literally come off. Don't be afraid to tell them when they're being to rough! Tell them to gently dab the alcohol on the skin, do not wipe.
Drawing Blood - A tourniquet can be used ONLY if a soft material such as your sleeve, a washcloth or webril is wrapped around the arm underneath it. Often times a family member may be asked to gently squeeze the arm instead of using a tourniquet. Ask for a butterfly needle if they aren't already using one, it is the smallest they have.
Removing Needle - Have them use a small piece of gauze over the site while removing the needle, then you can apply some pressure with the gauze until any bleeding has stopped.
Before IV Placement - Again, make sure they know that absolutely no adhesives can be used on the skin. If possible, ask for a 24 gauge needle, I believe it is the smallest IV they have but they can't always use that one. Get materials ready to secure IV once it is in. Tell them to gently dab the alcohol on the skin, do not wipe.
Securing IV - There are different ways to secure an IV without adhesive. It's up to you. First have them put a small piece of gauze underneath the IV so it doesn't get pushed down onto the skin. I usually bring my own Conform wrap and they wrap around semi-tightly and tape the gauze to itself to secure it. Remember to tell them tape can be used only if it does not touch the skin. Another thing you can use is Coban. It sticks to itself but not the skin and can be used to secure an IV. The IV can still come loose so avoid too much movement or bending of the arm (assuming that's where the IV is)
Removing IV - Gently unwrap or cut away gauze and make sure someone is holding the IV in place so it doesn't jiggle too much and cause discomfort. Once it's all unwrapped they can place a piece of gauze over the site and pull out the IV while you apply some pressure with the gauze until any bleeding stops.
Blood Pressure and Temperature
Blood Pressure - A child sized blood pressure cuff may be needed. The blood pressure cuff should NOT be placed directly on the skin. Put something soft underneath such as your sleeve, a washcloth, webril or cast padding. Also make sure they do not put it on too tight.
Taking Temperature - I take mine under the tongue however many with RDEB have fused tongues so it must be taken another way. If you do get yours taken under the tongue I would make sure to not let them place the thermometer themselves to avoid them poking you too hard. You can also have them use an ear thermometer, but remind them to be very gentle, sometimes they push down on the ear too hard. You can also get it done under the arm with a regular thermometer, although that can tend to rub or stick to the skin.
Intubating - Depending on the doctor and particular procedure being done, in some cases intubating can be avoided all together. If it must be done however, be sure they lubricate the tube(s) extremely well with something such as Surgilube. Do not tape tube to face or chest! Tape to a cloth laid on chest to stabilize.
Mask - If a mask is being used for anesthesia, be sure they lubricate any part of the mask that touches the face so it does not rub and cause blisters. You can use Vaseline or Hydrocortizone cream.
Anesthesiologist - If at all possible, speak to the anesthesiologist before the surgery to go over the Dos and Don'ts.
Eyes - Since the eyes are very sensitive to begin with and anesthesia can cause them to dry out even more, it is important to remember to put a lubricant in the eyes before hand and ask them to reapply more a few times during the surgery. Usually any gel type lubricant works. Also obviously remind them that the eyes can not be taped shut! A soft, damp cloth or vaseline gauze can be placed over eyes instead. If "blow by" oxygen is used, avoid having it blow across the eyes.
Lips - You may also want to put some ointment on the lips and if they're working in the mouth for dental surgery or dilatation you may want to remind the doctors to apply more throughout the surgery to avoid blistering.
Bedding/Moving - Move by lifting, NOT sliding onto OR bed.To make the hospital bed and operating table softer, egg crate or sheepskin can be used. Use them as a hammock to lift onto another bed.
Versed - A drug called Versed can be given before surgery to essentially make you forget everything that happens. This is used mostly for children who are very upset, scared and anxious about the surgery and getting put to sleep. I've had this once and it did make me forget ever getting put to sleep, however the effects last even after surgery and most people will wake and up go back to sleep continuously for several hours until it wears off. It also makes you a bit "loopy". But it is a lifesaver in some cases to ease the fear and anxiety.
Anti-Nausia - Medication is usually given to help reduce nausea and the chance of throwing up after surgery, although it may still be comman to be nauseous or throw up afterward.
Barium Swallow - Be sure to pad the table with blankets or sheepskin etc. You can use a straw to drink the barium.
Esophageal Dilitation - information coming soon
G-tube Placement - information coming soon
Hand Surgery - information coming soon
Dental Surgery - Because RDEB patients generally have very small mouth openings, dental surgeries can be difficult. Make sure all instruments going into the mouth are generously lubricated and the mouth and lips should be continually lubricated throughout the surgery. If a lot of teeth need to be pulled or worked on, it may be best to do it in stages (multiple surgeries).
Skin Biopsy - information coming soon
Cancer Removal - information coming soon
Blood Transfusion - Blood transfusions are generally a simple procedure although they can take several hours depending on how much you are recieving. Read the IV Placement information above for more information.
Iron Transfusion - Premedicating with Benadryl may be important, they will do this at the hospital. Reactions of iching, hives or swelling is not too uncomman when getting an iron transfusion. Be sure to tell the doctor of these kind of reactions. Read the IV Placement portion above for more information.
Epo Shots - Epo shots can be given the same way as anyone else. Usually they are given on the thigh or stomach. Instead of wiping the alcohol onto the skin, gently dab.
EKG - Since the sticky monitors can not be plced directly on the skin, for an EKG you can have them first cut pieces of gauze, such as Conform, and get them wet. Apply them to the areas the monitors will be placed and put the monitors directly onto the wet gauze, making sure the sticky part does not touch the skin. Someone may need to hold each monitor in place. Dry gauze will not work, they need to be damp.
Attention: The information on this page is not meant to take the place of a qualified physician.
Instruments, Gloves and Face Masks - All instruments placed into the mouth should first be generously lubricated with a water based lubricant. Gloves should be lubricated with vaseline whenever possible. Face masks should also be lubricated.
Heart Monitors/Leads/Probes - If monitors are needed FIRST cut off the adhesive portion of ECG leads, probes, pulse ox monitors etc. The monitors can then be secured using webril, koban or any other type of gauze or tucked under netting. Pulse ox monitors can also be clipped onto thumb or toe.
Eye Abrasions - Even when precautions are taken, it can be comman to wake up from surgery with an eye abrasion. You may want to have some eye medication on hand and you may want to have a patch or cloth to lay on the eye or wrap gauze around the head to keep a patch on. Keep the room dark if possible.
Rebandaging - If any bandages were taken off during surgery and not put back on you may want to have some bandages ready to rebandage right after surgery.
Cleaning Up - With dental/mouth surgery there may be dried blood etc. around the mouth. A washcloth wet with warm water can be used to gently clean it off. Ointment may need to be applied to the lips also.
Throwing Up - Anti-nausea medicine can be given before surgery but it is very comman to still be nauseous and even still throw up. So having something nearby at all times to throw up into is important.
This page was last updated on: January 13, 2015
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