Through The Eyes of Jesus: Aliens or Angels

Sunday, September 16, 2012

Aliens or Angels

We are home. AJ is happy but tired.

Today at the hospital, the operating rooms were super busy as they had a large number of serious trauma patients. AJ's doctor finally decided to use a procedure room in the pediatric intensive care unit. They would not be able to use gas to put him to sleep but instead would use conscious sedation. The medication would take care of the pain, cause AJ to be very relaxed and would also leave him with no memory of the event as it causes amnesia. They took him in and tried to get an IV and were unsuccessful. Then they used a medication to relax him and followed up with two injections to really knock him out. The doctor said it may cause hallucinations. We waited...waited and AJ just kept looking at us. So they doubled all of the meds. Then AJ began staring at me with huge eyes and kept repeating over and over, "Mama? Mama? He must have said my name a hundred times. When they did the procedure to open his stoma he screamed in terrible pain and shouted at the doctors to leave him alone and that he wanted to go home. Poor guy. When it was over he continued to look at me, repeating, "Mama? Mama? Then he fell asleep.

I was so thankful that he would not remember it. When he woke up he asked where we were and why. I told him that he had to have his g-tube replaced and that we were in the hospital. He was good with that and was even more excited when he heard we were going home.

On the way home AJ asked where I was when he told the doctors to leave him alone and that he wanted to go home. (Clearly he remembered some of this) I told him I stayed with him the entire time. He said, "No, I didn't see you but I saw an alien and it had five eyes and two mouths" He said he watched the doctors working on his tube and it hurt really bad. The Alien stayed the whole time watching him. AJ thought that was pretty cool because the Alien looked like me. He had an alien for a Mom!

Now you have to realize that some kids see angels when they are sick. Maybe they are real sometimes and maybe other times they are hallucinations. AJ loves aliens. An angel would not have been a big deal. So...God is good all the time...either he made me into an Alien creature just long enough to get AJ through his procedure or he provided some great medications so that AJ could have a great hallucination. Either way; AJ loved it. All is good.

Barbara

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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.