Please take a moment to read this, it was written by an EB mom about the daily life of her precious child. Gunner - Child Living with E.B. Words written by an E.B. mom about the daily life of her child with E.B. EB is having your child wake up in the morning (which is really the 2nd or 3rd time to wake up since he actually went to sleep) crying automatically because his lips are stuck together with thick scabs. (The coconut oil didnt last as long as it should have). EB is picking up your son carefully, one hand under the neck and the other under his bottom as to not shear any skin while carrying him into the living room. It is laying him down in the floor (still crying) and getting the half empty jar of aquaphor and coating his lips all the while gently pulling them apart. Once they are apart, they are bleeding. You take an unscented sensitive wipey and dab at the excess blood, then hand him his cup. He has to drink it all, because it has his miralax in it. If misses even one daily dose, it is excruciating pain and bleeding trying to go. EB is guiltily letting your son watch his favorite cartoon while you cut and prepare the bandages. Because you know that his happiness about Elmo will soon be gone once he looks over at you and realizes that it is almost bath and bandage time. You cut and coat all 4-5 (depending on wounds and if they are draining) layers of dressings. You strip your child of his clothes and carefully remove the bandages that arent stuck to wounds, careful not to pull off any skin in the process, all the while praying that the wounds have healed at least some since the last time they were open and out. Once again, you pick him up one hand under the neck and one under the bottom and carry him into the bathtub, all the while he is pulling at your shirt saying No no no mama no. You put him in the tub filled with bleach and pool salt water. You listen to him cry for the first minute or so until he gets used to the water and then you smile when he starts playing with his bath toys and splashing you with water. EB is getting your slippery kiddo out of the tub at the perfect time when there is still a bit of water left in the tub so his bottom doesnt stick to it. You wrap him in a soft baby towel, careful not to let the towel stick into the wounds on his body. You bring him in the living room, let him dry, and put a fresh diaper on. You move him to his dressing chair next to the bandages, hand him his meet meet (aka blanket) and let him once again guiltily, watch Elmo to distract him. You put on gloves and lube them with aquaphor. If bare gloves touch him, it will rip off skin. You cut away all of the dead and infected hanging skin. You make sure all the wound beds are the red color they need to be, and note the ones that arent. You lance the blisters with many sterile needles and push out the blood/serous fluid with a 4x4 gauze pad, to be sure it doesnt refill. You start the layering process, one limb at a time. EB is having to come out of your momminess and go into bandage mode. The determination you get to get through all of this as quick, but as efficient as possible, because your sons life literally DEPENDS on it. It is feeling 20 million different emotions. Happy that one area is healing, but bummed another has broke down that hasnt ever before. Mad that you cant get the transfer to stay in that perfect spot you need it to while you reach across to grab the 3 roll gauze. Giggly when you catch your son dipping his fingers into the aquaphor jar and rubbing it in like lotion. But annoyed when he rubs the greasy goodness into his just cleaned hair. Defeated because you realize your sons fingers have fused just a little more than yesterday, despite wrapping in between them. Mad that there is even EB in this world, thinking of all the things your son could be doing during these two hours besides sitting in a chair in pain. You are also strangely thankful for it at the same time because EB has made your son who he is and you couldnt be more proud of him. EB is holding back the tears when your son jumps in pain and screams at you to Stop it, move and no no mama! It is hearing your son asking you 50 times during the whole 2 hour bandage change, Momma all done? But most of all, EB is having your heart burst with such happiness, love, blessing, and joy when you really are all done, that Gunner looks up at me and says Ank you!! (Thank you) and lifts his lips up to you for a kiss. I put all the dressings on his side and back to keep his clothes from causing blisters, button up his onesie and pants, and he crawls away... Completely un-phased by the last 2 hours that were a complete hell on Earth for him in your eyes. He goes over to his trucks and he is down the hall before I can wipe away my happy tear. EB Awareness Week, October 25-31st. debra.org, irefuseeb.org, thebutterflyfund.org. Please feel free to share.
Posted on: Tue, 29 Oct 2013 06:31:53 +0000
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