Through The Eyes of Jesus: Discharge Day

Tuesday, November 8, 2011

Discharge Day

I am happy and AJ is really happy! We are going home today. We removed his G-tube last night and left it out for four hours in the hope that it would close up a bit. It did close some but we are still left with one open area that should not be there. We have a few more ideas in mind and we will be back to the clinic on Friday to see how it is progressing or should I say digressing?

AJ started an oral antibiotic this morning and so far he has not had any negative side effects. We hope it will continue to fight the infection. The IV medication is not available in an oral so we had to switch to a new one. We are so thankful for the medical advances that God has blessed us with. Just a few years ago AJ would not have survived the same infection. God is so good to us. AJ has continued to feel great through this entire infection.

Last night God allowed me to meet with an old friend. She needed some encouragement and it was so great to spend time with her. Please pray for K as God is moving in her life and she is looking for Him.

2 Corinthians 2:14

Thanks be to God, who in Christ always leads us

in triumphal procession, and through us spreads

the fragrance of the knowledge of him everywhere.

What a blessing it has been to share the goodness of our God while here in the hospital. He opened multiple doors to testify of his goodness.

Thanks again for all your prayers along this journey. We are looking forward to "resting" at home.

Love,

Barbara

1 comment:

ChristineNovember 8, 2011 at 6:14 PM
Aaaaah, so happy for you both and the rest of the family too. And so excited for the medical advances as well.
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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.