Monday, November 23, 2009

Eczema and Bacon Cheese Burgers...

It controls my life at times. Not because I have it. My #14 has it. It is a wicked disease of the skin. She is one of the unlucky ones who continuously fights staph infection within the open eczema. Her main allergy to set off the eczema is bakers yeast allergy. It lurks in some of the most common foods, which she avoids and then out of nowhere it's there where you least expect it. A little know product called Autolized Yeast Extract. Any kind of prepared, pre-packaged, frozen food can have it in there. They use it as a way to preserve food. We try our best. And sometimes we fail. But right now here is the 4*1*1*...

She was given the Flu Mist back in September. It is a great way to get the Flu Vaccine to children. Non-invasive. #14 has to be vaccinated from the Flu. It can and will make her very sick due to her compromised immune system (just part of her disease). So she was given the mist. She should have never been given the mist, it is a LIVE immunization and #14 can not, I repeat can not have live virus. So she gotthe mist and got sick. When her viral load count gets high her eczema flares, real bad. So she has a viral infection with open eczema. Fast forward another couple of weeks and she has picked up a staph infection. Don't ask where, because staph bacteria is everywhere. So she has been taking her bleach baths, on oral antibiotics for the past month, using all her topical steroid cream, and anti-B ointments. Phone is ringing, be right back...

So that was our wonderful Dr. Wasserman's office. She has to go back yet again for another skin culture. Today at 3:00pm (sigh). That means we will have it done today and then more waiting. 48-72 hours. That is how long we wait. I hate the wait. She is in pain, her skin hurts. She gets very funny smell when it is bad. She smells like stale bread. Her room even smells. I can spend all day scrubbing and bleaching and the smell is still there. It hurts her feeling that I can smell her. And she sleeps, alot.




God in Heaven, why is there not a cure for eczema. What in all of this wonderful knowledge is there not a way to find out why and how. Why does her body do this and how can we fix it? Why was she given this cross to bear. This is emotional for our whole family. This is an emotional post. But we pull up the boot straps, follow her example, and find something to smile about. She loves the bacon cheese burgers (minus the bun) at the hospital. She thinks about bacon cheese burgers. I will hate to disappoint her, but I really don't want cheese burgers for Thanksgiving.

1 comment:

Jessica said...

You were chosen to have a child with eczema, because you CAN handle it. You are stronger than you think. You are just such an amazing support and crutch for her. Hang in there, and PLEASE let me know if there ANYThiNG I can do for you. Even if it means just me coming over for a shoulder to cry on