Friday, June 8, 2012

What now?

Well, Eli had his Endoscopy and biopsies done on Wednesday. The procedure only took about 8 minutes. Poor guy was out pretty good! Dr. Higgins, the GI doctor, biopsied Eli's esophagus to test for EE, Eosinophilic Esophagitis. While doing the scope, he also found a hiatal hernia at the base of Eli's esophagus. He's not too concerned about the hernia now, but it may need to be repaired via laparoscopic surgery. As far as the biopsy results, it would take until Friday (today) to get those results.

We were at Eli's feeding therapy when I received the call from the doctor's office concerning the biopsy results.

Back in June 2011, we were referred to the Texas Tech University Health Sciences Center for genetic testing. We did the lab work in June, but it took until August to get the results. Needless to say, we're becoming accustomed to waiting for answers and results. When those results finally came back that Eli had Klinefelter's syndrome, I got the phone call from the doctor's office and my stomach immediately dropped when I answered the phone, fully expecting a nurse to be on the other end, but surprised to hear the doctor's voice.... That's never a really good sign.

Well, I got that surprise again today. The phone rings, I immediately know that it is the GI doctor's office calling, and I answer... only to hear, "Hi Rachel. This is Dr. Higgins. Guess who has Eosinophilic Esophagitis." So, it's official.... Add one more diagnosis to the list. Eli has Eosinophilic Esophagitis. I'm still getting used to saying that; not because it's so difficult to pronounce, but because it's just one more battle; one more thing to medicate; one more thing to deal with. Talk about scary.

So, Dr. Higgins has called in an inhaled steroid, only he doesn't want Eli to inhale it; he wants it dropped down his throat and swallowed. We'll start that today.

Then we go back to Dr. Higgins in a month for a follow up, both with the EE, as well as with the hernia.

We also have another appointment scheduled with the Allergist and Immunologist to do a consultation to begin testing for food allergies.

Just when we think things are calming down, we're thrown for a loop.

So, now we'll start this treatment and just keep going. I have to keep telling myself, "Don't give up. This can be dealt with."

We just ask for continued prayers. Things are going to be tough for a while. We're going to continue with therapy to work on sensory issues, but have to put other things on hold until Eli has been doing the treatment for EE for a bit. He can't exactly try to eat when he's allergic to food.... At least things are starting to make sense now. He doesn't eat because it DOES hurt. And because of that pain, he's terrified of food. He gags, partially because of fear, but also because of the reaction in his esophagus.

It's a lot to take in. But we'll deal with this, too. Like Adam (my husband) said, "At least it's an answer." This is the answer we've been waiting for since August 2010; almost 2 years. But now we have an answer and now we can begin to formulate a plan.

For more info about Eosinophilic Esophagitis, visit http://www.eosinophilicesophagitishome.org

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