Through The Eyes of Jesus: Out of surgery

Wednesday, October 24, 2012

Out of surgery

AJ is out of surgery. His airway looked good in the scope. He did have some extra bleeding but she said he had a lot of blood blisters in his mouth and throat before starting the procedure. We are in the PICU and they will watch to make sure he does not have an airway problem. He is miserable. I just want the next 48 hours to fly by.

Thanks for your prayers.

Barbara

1 comment:

KristiOctober 24, 2012 at 11:10 AM
Lord, we pray for heavenly peace on the Fischers and especially little AJ. May AJ feel your strong and gentle arms around him, Lord Jesus! If it be Your will, heal his throat so that he may continue to laugh, shout, and speak, Lord. We thank you for how you have sustained this child of yours and pray for your mercy again and again, God. Thank you for hearing us and answering our prayers, Father. In the name of Your Son, Amen.
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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.