Through The Eyes of Jesus: Infection returns

Saturday, November 19, 2011

Infection returns

Just a quick note to let you know that AJ's infection is back. His G tube hole is closing up to normal size; for which we are thankful. We caught the infection really early and he will go back on his oral antibiotic today. Hopefully that we keep him out of the hospital. He has also started some narcotic pain meds. I really have held back on starting narcotics but this infection has caused such pain for him. I hope it is only for a short time. He is also experiencing very painful muscle spasms in his abdomen around the g-tube site. He can take Valium to help settle that down. Thanks for your prayers. AJ seems to manage a happy attitude through all of this.

Barbara

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What is Recessive Dystrophic Epidermolysis Bullosa?

It is a rare genetic disorder that causes AJ's skin to blister and tear with the slightest friction or contact. He can have severe blistering anywhere on his skin. Internally his mucus membranes and organs are affected. Due to blisters in his mouth and throat, he eats very little by mouth and receives his primary nutrition through a gastrostomy-jejunostomy tube (G-J) that is placed in his stomach and small intestine. He struggles with breathing at times as blisters form in his mouth, throat and upper airway. There is no cure for EB. AJ will live with constant pain and scarring. With each tear to his skin, the skin scars and eventually limits his movement. His fingers and hands will begin to fuse and curl together. The only treatment for EB is daily wound care and bandaging. Each day we unwrap his body, bathe him, treat his open wounds and then wrap him up all over again. AJ has many medical providers that help us with his care. He has a power chair that he uses in the community to reduce the friction on his feet. He also takes many medications to reduce the acid reflux that damages his esophagus and to help with the intense itching that EB creates. Children that do not succumb to infection, malnutrition or airway complications develop an aggressive form of skin cancer in their teen years. Children with AJ’s disorder are often referred to as, “Butterfly Children” as their skin is as fragile as a butterfly’s wing.