Friday, June 22, 2012

The Sad And Hard Truth

After learning that her Retina had detached, I went into a dark place emotionally.  Its a familiar place that I recognized right away.  The sadness and desperation I felt the day we found out Emily was blind, had returned. I was scared for her, scared of the unknown.  

Her only hope was a surgical attempt at reattaching the retina, which carried only a 30% chance of success.  And if it could be reattached, there was no guarantee that any of her vision could be restored.  The sooner she had the surgery, the better. 

Why did this happen? 
When did the retina detach? 
Why haven't we noticed any change in her vision? 
How could we not know that something was drastically wrong???

As I walked out of Dr. Kane's office, I tried to hold myself together, waiting until I got to the parking garage to fall apart.  The irony is that 4 1/2 years ago I did the exact same thing, walking out of the exact same building, falling apart in the exact same parking garage.  Back then Emily was only a week old and her only hope of gaining any vision was to have a cornea transplant.  Different surgery, hoping for the same outcome.  I would take a cornea transplant over a detached retina anyday.  Sad, but true.  

Emily didn't understand what was happening, or why I was so upset.  I picked her up, hugged her and sobbed uncontrollably.  She was comforting me..."Mommy why are you crying, please don't cry, I love you." she pats my back as if to say its ok, everything will be alright.  And of course that only made me cry more.  Hasn't this child been through enough? WHY DOES SHE HAVE TO SUFFER MORE?!?!

When I was able to pull myself together, I got in the car and started heading home.  I had been texting my husband all afternoon so he knew what was going on, but I struggled to bring myself to tell him over the phone in more detail.  I honestly don't even remember most of the conversation because after I told him "only a 30% chance"...I think my brain blocked the rest out.

We were at a disadvantage.  The odds were stacked against us.  And thats not something we've ever had to contend with.  With all of her previous surgeries, odds for a successful outcome had always been in our favor.  I wasn't used to feeling apprehensive about whether or not things would work out.  I tried to remain positive, almost willing myself to believe that against all odds she would be ok.  But I had just had a line drive out of left field smack me straight in the heart...this was completely unexpected, and I had the wind (and hope) knocked right out of me.  Emily has been battling Peters Anomaly, pediatric glaucoma, cataracts, corneal ulcers, corneal scratches and bacterial infections for the last 4.5 years.  And for something completely unrelated to any of those issues to come out of nowhere and steal her eyesight forever, was probably the most difficult part to come to terms with.  Its like someone who has battled and beaten a life threatening disease, walks to their mailbox and gets hit by a bus.  It doesn't make any sense and it certainly doesn't seem fair.  Emily doesn't deserve this, plain and simple. Nothing about this is fair. 

Surgery was scheduled for May 1st, and with each passing day it became more obvious that she couldn't see out of that eye anymore.  I spoke with her teacher and therapist at school and the only thing out of the ordinary they can recall was her stepping off the balance beam more than usual during an OT session the week before.   When I covered her left eye and asked her if she could see anything out of her right she said yes.  But when I covered her right eye, I asked her what she could see and my heart fell to the floor when she said "nothing Mommy, its just black".  I didn't know how to process the amount of sadness those 5 words made me feel.  

May 1, 2012 - Surgery Day

This is surgery #20 
We were told the surgery would take 4 hours or more, so we prepared ourselves for a long wait.  She's older now and understands what being in the hospital means for her.  So even just the simple task of changing into the hospital pajamas is an issue.  We fought with her for a while and finally had to forcefully change her clothes, and then she cried "I don't want to wear the silly pajamas, I want to go home" for the next hour or more while we waited.  If I could impress upon any hospital that deals with children just ONE thing that would make a difference for the child and the parents it would be this...Wait until the last minute to make the poor kid change their damn clothes.  Is it really that big of a deal that you have to put her through more emotional torture than she already is dealing with? Or, here's a novel idea, give them a sedative FIRST.  

This photo of Emmy waiting to go back into the operating room says it all...fear, sadness, innocence...

We both took her back into the OR, and it never gets easier.  I fell apart in the same hallway where I've cried dozens of times before.  Only this time I knew there was something much greater at risk than ever before...there were no "next times" or "other options".  

Less than 2 hours had passed and we had made our way back up to the waiting room after getting something to eat downstairs. The nurse told us Dr. Lopez was looking for us...I knew that wasn't a good sign. 

We sat down with him in a small conference room and he laid it out on the line.  No sugar coating this one...He could not reattach her retina, it was torn and too far damaged to repair successfully.  She would never see out of that eye again.  

I was has been almost 2 months since that day and I am still numb.

I cried, Jason cried.  

A minute later a nurse came in to see if we needed anything but then had to politely kick us out because they needed the room for a meeting.  Gee couldn't give us a few minutes to process the grief and sadness that just exploded in our hearts?  I hope their meeting was about changing the policy of when to put those stupid pajamas on the poor unsuspecting kids...

We went back into the waiting room and sat there in silence. My cell phone went off with a text from a friend asking how Em was doing.  I think it took me 5 minutes to type a complete sentence back to her. One letter, pause, next letter, pause...until the harsh truth was spelled out in front of me.  I couldn't bring myself to explain much to anyone else, so Jason texted a bunch of people and posted a small update on facebook.  I felt myself sink deeper into that black hole I had been in for a week.  

Dr. Kane came to talk to us after he finished up his part of the surgery.  He explained in more detail than Dr. Lopez did, but in the moment none of it really mattered.  They had to undo the stitches in the corner of her eye, and partially remove the cornea to allow for better access to the retina.  The stitches in the corner were not put back, there was no reason to. He removed the lens implant and the tube from the point in leaving those there either I suppose.  Everything felt so final, like after all this time we have no other option but to give up on the left eye.  And that was the reality of it...there was nothing left to try.  Like someone was calling time of death to that eye, while I am still yelling "clear" with the defib paddles in my hands.  I wasn't ready to give up. But everyone else was already walking away.  

Recovery was emotional torture. She came out of anesthesia begging and screaming for us to take the patch off her eye.  She just wanted to see with both her eyes. "I can't open my left eye"....her cries still haunt me.  The next day wasn't any better.  When we got to Dr. Kanes office and he allowed the patch to be taken off, she says "yay I can see with both my eyes again!"  Those words cut my heart into a million pieces.  

What happens now?
Her eye will deteriorate...the cornea will become cloudy and her eye will shrink in size.  It already had looked much smaller than the day before because all of the pressure was released during surgery.  Her eye had already stopped functioning, not just her vision, but the eye itself. 

At some point in the next 4-5 months we will need to take her to see an Ocularist, someone who will make a prosthetic shell to cover her eye.  They hand paint them to match the other eye so she will look more natural. But the function of the shell isn't just for aesthetic purposes, it will actually help to maintain the correct bone structure of her face as she grows.  Because her eye will no longer grow and support the space within the eye socket, the shell will provide that support, preventing any distortion of her bone growth and facial appearance.  THAT was a hard pill to swallow.  And once again its something we had never anticipated we would have to deal with.  

It has been almost 2 months since her surgery, and her eye has deteriorated quickly.  

This is our sad and hard truth...

I am still in the dark hole of sadness, I am still grieving for the loss of that eye.  The impacts it will have on her life are yet to be seen...and I am afraid for her.  Being legally blind in one eye, and visually impaired in the other is going to be a challenge for her...but she will overcome it and by all means never let it stand in the way of doing what she wants to do.  

My daughter has taught me so much about life, courage and strength.  She is one of the strongest people I have ever met, and she doesn't even know how strong she really is.  She's amazingly independent, always wanting to do things on her own, only asking for help when she really needs it.  She surprises me everyday with what she can see and do...and I have a feeling her entire life will be filled with much more success than failure.

She is Hope personified.

Thursday, June 21, 2012

6 Months Of Heartache

It has been 6 months since I posted an update here on the blog.  So much has happened in that time.

January 6, 2012 - Left eye - another Corneal Ulcer and infection. We treated her with antibiotic ointment every 4 hours, drops every hour around the clock for a week. Then we dropped down to every 4 hours, but still had to give them to her throughout the night.  Medications continued for almost 2 months, finally only down to twice a day.  But as the ulcer healed (which was very slow), it made the scarring in her left eye bigger than it had been before. Dr. Zaidman believed she had learned how to see around the scarring, but began wondering how much she could really see.  

March 6, 2012 - After almost 2 months on the meds, it appeared she had gotten another infection in her left eye, so we began the whole hourly eye drops and ointment all over again.  I suspected she became Toxic from the Tobrex, which has a history of toxicity as a side effect from long term use.  No one would confirm that, but that was my gut feeling.  I backed off on the Tobrex and just gave her the other ointment and drops...

I started getting really depressed...My heart was hurting...I was struggling with why Emily has had to bear the burden of blindness and scared for what her future may be like. She will always be "different" to other kids. Right now she doesn't realize that physically her eyes are different than others, but someday she will. And her self esteem will inevitably suffer. I never want her to feel bad about herself, feel the pain of ridicule or failure. I can only protect her from the harsh reality of our world for so long...and it breaks my heart.

March 18, 2012

I noticed a red spot, like a blood blister, on the surface of her cornea on her right eye.  I knew it wasn't something that had been there earlier in the day and I began to panic thinking that it was a sign of a perforation in her cornea.  So at 8pm we drove out to Westchester to take her to the Emergency Room.  The ophthalmologist on call happened to be one of the residents that had seen Emily in the office and she was great with her.  She took a culture, used the slit lamp to examine her and determined that the red spot was a dilated blood vessel caused by a scratch on her cornea and/or the possible infection.  She called Dr. Zaidman and explained what she saw and then gave us some new drops.  The next day we saw Dr. Z and he was not concerned with the blood vessel at all. Since there was a scratch on the cornea we treated it with new meds that she would hopefully respond well to. It appeared as though she had built up a resistance to the one antibiotic drop she has been on which would explain why she keeps getting infections. He hoped the scratch would heal quickly without damaging the cornea or causing scarring.  Thankfully it wasn't as severe as we had thought the night before, but we were right to bring her to the ER. We also found out that the left eye was NOT infected 2 weeks ago, but it looks much much better than it did before. No infection, increase in meds didn't matter because she is resistant to it, it looks much Better and the only thing is she isn't on the Tobrex anymore? So...maybe I was right and it was toxicity from the Tobrex ointment. Of course he won't say that, but that's my take on it. 

The surprise of the day was when Dr. Z mentioned that the scarring on the left eye may need to be addressed, because as she gets older and begins to learn to read, it may impede her vision. my surprise he said a 3rd transplant may be necessary.  I had been under the assumption that a 3rd transplant wasn't something he would consider.  Maybe his opinion changed since then, but we know the success rate lessens with each one.  I was happy to hear he would consider it because I wanted her to have the best vision possible.

April 8, 2012 - Easter

Could she be any cuter or HAPPIER?!?!?!

These are two of the last pictures I have of her before devastation hit.  It's bittersweet because I don't know at what point things took a drastic turn for the worse.  She has never looked as beautiful, innocent and full of joy as she does in those photos.  My sweet Emily...My heart is overflowing with love for you.

16 days later...

April 24, 2012 - At a follow up with Dr. Zaidman, I mentioned that I thought the scarring in the left cornea looked a little bigger than before.  He began looking closer at it and suggested we do an ultrasound because he saw something he wasn't sure about.  After the ultrasound, he showed me an area on the screen behind her lens implant that he didn't understand.  There was something there, but he didn't know what it was.  It could have been a calcium buildup or scar tissue that formed around the tube from the Glaucoma valve, but he couldn't tell.  He wanted me to take her in to see Dr. Kane as soon as possible.  But it wasn't until he mentioned that he wanted a "Retina specialist" there as well, that I was really alarmed.  Immediately my heart sank and I knew that the "something" he saw could be her retina...he didn't say that, but in my heart I knew.

That night I went for a drive, I needed to get out of the house. My mind was racing a mile a minute and I ended up at a friends house...part of my heart is probably still lying on their floor because it poured out of my eyes like a river.  I wasn't giving up hope that the "something" was actually "nothing" or at least nothing "serious".  But I was scared to death that my intuition was right and that her retina had detached.  I felt better after talking it out with them, but the gaping abyss in my stomach was still there.  

April 25, 2012 - Dr. Kane examined her, but had no idea what he would see...

Dr Kane, Dr. Schubert and Dr. Lopez all did their own ultrasounds...all 3 doctors agreed...her retina had detached.  Sitting in Dr. Lopez's office trying to maintain my composure, but not doing a very good job at it, I asked the question that I already knew the answer to.  Through stifled tears I asked "So can she see anything right now"? ......

"No, she only sees darkness with that eye..."

...the sound of my shattering heart was probably heard clear across the city.

Ink is Forever

For a long, long time my husband has wanted to get a tattoo in honor of Emily and the struggles she faces everyday.  While a butterfly and the word Hope was an easy pick for me a couple years ago, he could never quite settle on something.  Until one day he was driving home from work and it hit him...

On June 2, 2012 - a friend of Jason's who does tattoo work made these words part of him forever...

Ink is Forever...Hope is Eternal
This tattoo means so much to him...its a reminder of her strength, her courage, her struggles, her determination, her journey...and the unyielding Hope that we have for not only her eyesight, but for the wonderful life we want her to have. A life that is full of love and laughter, goals and accomplishments, more successes than failures and more smiles than tears. 

Her where OUR Hope for her lies.