Through The Eyes of Jesus: In the hospital

Sunday, September 16, 2012

In the hospital

Sorry for the long delay. We have been very busy in fun ways but right now AJ is in the hospital. He was having a great time with his sister, Katie, when he fell and pulled out his G-tube. His tube is very difficult to replace and we could not get it in. We went to a local hospital in Minneapolis since we were not near our home. The doctors were unwilling to do anything and they made AJ wait four hours before agreeing to help put his tube back in. As expected and as I had warned them many times, his tube site had closed. We are back down at Mayo as he spent the night waiting to go to the OR this morning. Due to the lack of fluids he is constipated (also not a surprise) and is vomiting (happens with constipation). Hopefully he will get to the OR soon so that he can get his medication to get his intestines moving. Patience is the key. He is watching movies but not feeling well at all. Thanks for your prayers for AJ. Hopefully I can update soon with some good news. AJ is much happier to be back at Mayo and so am I!

No comments:

Post a Comment

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.