Through The Eyes of Jesus: Staying longer

Monday, November 7, 2011

Staying longer

AJ is responding well to the antibiotics. So well that we are going to stay another day to keep them running through his IV. The struggle now is what to do about his G-tube site. It should be one, nice, small hole that the G-tube slides into. Unfortunately, It is more like two holes next to each other. This isn't going to work as his feeds will run out the hole and he will not be able to bathe as the bath water (that is mixed with vinegar, bleach and salt) will run into his stomach. They are trying to come up with a plan. AJ is hyper, bored and begging to go home. I am tired with only 4 1/2 hours sleep last night. I expect to go home tomorrow if the infection is the only issue - the problem with the site still needs to be addressed.

I made AJ go out for a walk today. For some reason he was determined not to leave the room. I took him to the chapel here. It is beautiful. I enjoyed the walk and the chance to pray in a beautiful setting. Now I'm hoping he will nap.

KM is really sad as she is at home with the dog. She hates to be alone but she is home educated and it helps that she can care for the dog. I keep telling her it will be over soon. She struggles the most with me gone. KJ says they can only make it a short time with me gone. I laugh - they really get stressed out but Scott still does a good job of taking care of them. JR has a job now so that will help occupy her extra time.

I'll update again when I know more. Thanks for your prayers and your messages.

Love,

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.