Monday, January 23, 2012

Amazing Photo

I took this photo to try and get a better look at how the ulcer was healing and couldn't believe what I saw. Using the flash on my iPhone camera, you can see the beautiful red reflex...but look closely. You can also see not only the tube from the glaucoma valve, but the lens implant that replaced the cataract she had removed a couple years ago. The roughness of her cornea is harder to see but it shows the scarred area very well. I pray every day for healing, fading of the scar and continued clarity of her corneas.

Thursday, January 5, 2012

It Was Only A Matter Of Time...

If there was one word to describe Peters Anomaly, it would be EVIL.  If there were two words to describe how I feel right now, it would be Helpless and Devastated.

If I had one question to ask would be this:  With everything Emily has been through, WHY does she still need to suffer?

To be honest, God cannot give me a reason worthy enough of acceptance. 

The last few days Emily's left eye has not looked very good.  It has become bloodshot, swollen and her cornea looks as if it's "deteriorating" for lack of a better word.  I knew these signs, I knew in my gut what they meant.  And when I went back to a blog post I wrote back in January of 2010... was confirmation to me that I was right.

Corneal Ulcer: an open sore, or erosion of the cornea, most likely caused by infection.

Last night I placed a call to Dr. Zaidman who was in surgery all day.  His secretary got a message through to him about Emily and she called me back to tell me I need to have her seen by our local Ophthalmologist today because he would be in surgery again all day. I called Dr. Morgan and left a message on his emergency line.  When he called me back he said he would call in a new antibiotic eye drop to use every hour while she was awake until he could see her.

It took me 2 hours and going to 2 different pharmacies to get her new drops and she was asleep by the time I got home.  I snuck in her room and gave her one drop.  I could not get in to see her doctor until 4pm the next day, so I made a judgement call to send her to school...only to get a call 20 minutes later from the school nurse who said she was in her office crying about her eye hurting.  I immediately picked her up and drove right over to the doctors office.  This could not wait until 4pm. 

When I got there I told the nurse not to even bother dilating her eye....she doesn't have a pupil in the left eye, so it would be pointless for her to do it and make us wait 20 extra minutes.  Why don't these people know she is not the average eye patient by now???  The other woman in the office was badgering me for the co-pay...well I was so distraught over the devastation this new eye problem could do to Emily's vision, that I left without my purse so I had no way to pay it.  She insisted I call my husband and get a credit card number because they needed the co-pay TODAY.  Ok lady whatever.  Your stupid $50 is not my top priority, sorry you can't see whats important right now.

When Dr. Morgan looked at her, his reaction said it all.  It was bad. Corneal Ulcers are never good, but
big ones are worse than small ones.  This one is big.  It encompasses most of the white scarred area on her left cornea, and in fact it may have enlarged that scarred area. 

He gave her some antibiotic drops and called Dr. Zaidman to consult with him about how to move forward with treatment.  While sitting out in the waiting room, Emily moaned in pain and clung to me while begging me to take her home.  We needed to wait to hear back from Dr. Z before we could leave and Dr. Morgan wanted to give her some more drops while we waited.  I hugged her tight...and not caring in the least about the other 5 people in the waiting room...I cried.  I've never been one to cry in public, or in front of Emily, feeling the need to be strong.  Show my daughter that although she may be feeling vulnerable, sad and in pain...I am her rock...I will be strong for her.  But in that moment I couldn't control my emotions.  My fear and sadness for her was too much to hold in.  Why does she have to endure such pain?  She has been doing so well, pressures have been good, corneas clear (except for the scarred area) WHY???

She. Does. NOT. Deserve. To. Go. Through. This.

Zaidman finally called back, with instructions to give eye drops every hour until he can see her tomorrow.  Dr. Morgan suggests to use all 3 antibiotics and just bombard her with meds since this needs to be treated "aggressively".  If that doesn't express the seriousness of this, nothing does.

I went to the front desk to see if there were tissues and the nurse felt terrible for us. Moments later, the secretary who was so hell bent on getting my co-pay from me, stood up and announced that I didn't need to worry about the co-pay...just wait for the bill to come in the mail and send in the payment when I got a chance.  Gee...NOW are you seeing that sometimes $$ isn't what makes the world go around?  My 4 year old daughter may lose her vision because of an infection that is ERODING her cornea, and all you care about is my freakin $50????  Thats'll get my co-pay when I'm good and ready bitch. 

"Around the clock hourly antibiotic eye drops"...."need to treat this aggressively"..."Mommy my eye hurts, I just want to go home"...Those are the words written on the pieces of my broken heart today.
In the matter of days, my happy-go lucky, always smiling little girl who's outlook on life is that the world is full of rainbows and butterflies, was reduced to tears for the first time in her entire 4+ years because of her eye disease.  Not once during her 19 surgeries or countless complications that have developed from her condition, has she cried because her eyes hurt.   Maybe as a baby, she may have cried because she was uncomfortable, or because she was waking up from anesthesia and didn't understand what had just happened to her.  But she has never uttered the words "my eye hurts".  The sadness and pain in her voice today broke my heart, and once again I was helpless.  I can't fix her. I can't shield her from harm or hurt.  And as a mother, thats my job. 

When things are out of my control, they are in God's hands.  And while I will never lose Hope for her...I am starting to lose faith in myself and in God.  How can I/He allow her to continue to suffer?  Which one of us is dropping the ball?  Is He too busy answering prayers from those "praying" for things in life that don't really matter?  Like the Kim Kardashians of the world who probably pray for TMZ to see them living it up at the latest night club wearing designer jewelry, clothing, shoes and accessories so that they can pay for their $20 million wedding for a marriage that only lasted 72 days?  I heard somewhere that she had her "rear" insured because its part of her famous image.  Well I have a pretty plump ass too, where do sign up to cash in on my "assets" so I can ensure Emily has the best medical care money can buy?

....Emily has an appointment with Dr. Zaidman tomorrow morning at 10:30...only 16 more hourly eye drops to go...

The saving grace is that every time my hourly alarm goes off, I call Emily over to get drops and she comes running without hesitation.  You gotta love this girl's attitude.