Through The Eyes of Jesus: Successful Dilatation

Thursday, March 1, 2012

Successful Dilatation

AJ is home after a successful dilatation of his esophagus. I have not heard the specifics yet but was told the news was only good.

More good news came from his airway exam. His airway is considered to be almost a size 6 which is the same as an adult airway. This is very good news considering there was a day when his airway was the size of a coffee stir stick. His vocal cords showed some thickening which she thought is due to coughing and EB. This would be the reason for his hoarse voice. She is not concerned about it and we were told that we could go much longer between appointments. Here is the picture of his airway:

They took very good care of AJ and he appears to have come home no worse for the wear. He is sick with nausea and vomiting but it will get better as the day goes on. We are very thankful for the great medical care and for God's hand in caring for AJ.

Barbara and AJ

1 comment:

AnonymousMarch 1, 2012 at 8:59 PM
Awesome news... I've been thinking about u guys... Hugs to everyone!! Beth (Casey's. Mommy)
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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.