Through The Eyes of Jesus: There Is No Pain In Heaven

Monday, December 16, 2013

There Is No Pain In Heaven

We just returned home from the hospital and we are so thankful to be home. AJ developed another serious infection on his foot (He had the same infection a month ago; different foot this time). He was in so much pain that his body shook and he kept screaming. He had a temp, had not walked in 24 hours and I knew the wound was not going to heal without help. The clinic was busy so the ER was our only choice. Thankfully it was not a long wait before they got him in.

AJ was a real trooper even when the nurse (that acted like she knew all about EB) tore the skin off his foot. You can imagine how much pain he was in. He is feeling better now with some good pain meds. The antibiotic should do its job in 24 hours, otherwise we are inpatient. AJ was so sweet when we left, he told the nurse that he wanted to go to heaven; he told her there is no pain there. The nurse looked pretty uncomfortable with that statement. We asked him to stick around a while more and that he would be feeling better soon.

I'm so glad heaven is real and AJ knows that someday Jesus will take him there. We may be home but it's only our temporary home. Heaven is our real home and it's good to remember that.

We appreciate your prayers for AJ, that this infection would clear quickly.

Barbara and AJ

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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.