Through The Eyes of Jesus: Home

Saturday, October 27, 2012

Home

We are home! AJ was discharged late Thursday. He had a hard time adjusting at first but is now pretty happy to be back in his own space. Thanks to those that brought him surprises. He was especially excited to see his siblings, Katie and Andy, as they drove down from the cities for a visit.

Last night he started talking more. He doesn't want to open his mouth often because he lost the skin off of his lips during the procedure. They keep trying to heal shut so we put lots of Vaseline on them. I know they hurt when he pulls them apart but he has to keep doing it. He brought me his pain scale picture and showed me that his pain level had come down significantly. He had a big smile on his face. We are still giving pain medication every four hours and he is on an antibiotic.

I am so thankful that he is this far past the actual surgery. Please keep praying that his oral tissues heal without any strictures. We won't know for a while if he will have any problems with this. He has started to eat a few things that are very soft and in very small amounts. This is a time to be especially thankful for his gtube as it allows us to keep him well fed and hydrated. He can get all of his pain medication without having to force him to swallow anything.

Thanks again. Your support is so appreciated.

We give thanks to God always for all of you, constantly mentioning you in our prayers, remembering before our God and Father you work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ.

I Thessalonians 1:2,3 (ESV)

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.