Through The Eyes of Jesus: Surgery tomorrow

Wednesday, June 6, 2012

Surgery tomorrow

Sorry for the long delay. AJ is doing well but I wanted you to know about his scheduled surgery for tomorrow.
He will have a gtube revision as his stomach lining is retracting through the current opening. They will open a new site and the old opening will have to be left open until it heals as it would get infected if they close it. AJ's history shows that he does not tolerate sutures that are meant to dissolve. Instead they become infected fistulas; usually with MRSA. There are no other options to hold his stomach to his muscle wall so we have planned on a long recovery with the expectation of multiple infections.

Thank you for your prayers. God is so faithful to us and has provided great physicians to meet his physical needs. AJ is looking forward to a reduction in his pain. He is especially excited to watch hours of TV; me, not so much.

God is good; all the time,

Barbara and AJ

1 comment:

AnonymousJune 7, 2012 at 10:34 AM
May all go well with AJ! May God continue to bless you and your family<3
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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.