There is no "I" in eye surgery

Waiting room at 6:00 AM

Olivia was born exactly two years, two months and two days ago. A lot can happen in that time span, but if you think about it, relatively speaking, it is actually a short amount of time.  Yet, somehow in that time frame Olivia has managed to have over 175 therapy sessions, over 50 doctor appointments, more than 20 meetings with some type of special service provider, about 12 visits to the children's hospital, and on two separate occasions, she has been placed under sedation- one time for an MRI and the other for her recent eye surgery.   

We rush Olivia in and out of day care from one appointment to another.  Always meeting with a different doctor or therapist.  Each specialist is in charge of a different function in Olivia's brain.  From her speech to her fine motor skills to her gross motor skills to her eye care.  Olivia has endured more doctor's waiting rooms than most children do in their entire first 10 years.  And yet, despite all of our "experience" with doctors, it still doesn't get any easier on me or my husband, and definitely not for Olivia.

This recent trip to the children's hospital was just as tough.  Olivia was fortunate enough to be the youngest child having eye surgery that day, which meant she would go first at 7:30 am.  This also meant that we had to be at the hospital at 6:00 am, before the front doors were even unlocked.  We were greeted by the nicest attendant in the garage who kindly unlocked the door and let us pass.  Whoever he was, he should get a raise.  He is exactly what people need to see that early in the morning:  assurance, a smile and kindness.  We made our way to the waiting room to check-in and I quickly realized that this out-patient facility was not limited to children only, but to all patients.  Which is fine either way, but it made my own child's check-in stand out among the college athlete having knee surgery and the elderly gentleman having hip surgery, among the many other adults in the room.  The adults looked at me with those sad eyes, that said, "she is so young, why would she need surgery?"

After sitting in the waiting room trying to entertain my two year old at 6 in the morning, we were finally called downstairs to prep for Olivia's surgery.  We checked-in again and she was weighed and we changed her into a hospital gown.  After a few standard tests of her heart rate and blood pressure, we were again left to wait for the doctor and for the next steps.  I entertained Olivia in a red wagon, parading her around the floor. Nurses waived and smiled as we came by their busy stations.  Olivia laughed and said "hi" every single time we passed the same people.  The nurses eventually went back to their work, but Olivia continued to wave and smile, unknowing of what was to come next.

As if sensing my anxiety growing, the anesthesiologist approached us and explained how Olivia would first take some medicine that would relax her and then they would carry her back to surgery.  Not fully understanding just how relaxed she would be, I assured him that Olivia would not go quietly with a stranger and we would be happy to go back with her.  Turns out, he had some VERY relaxing drugs and our little girl turned into a loopy, silly girl, that struggled to hold her head up and her eyes open.  But to be honest, it was the cutest thing I have ever seen.  Which is why I captured it on video and I will play it and embarrass her when she is older:

Olivia was also relaxed enough that someone was able to carry her off to surgery, without Mommy or Daddy.  I have never felt like someone was walking so slowly in my life.  The hallway seemed to last forever, and my husband and I stood there and watched our groggy child's head bob along as they made their way back to the operating room.  And then the doors closed and she was gone.  During that time, it had been like all sound had stopped, I heard nothing else, I saw nothing else, except Olivia leaving the comfort of my hand while hanging onto a blur of blue scrubs.  The rush of sound coming back was like reality hitting me in face.  And just like that, all that was left to do was to wait.

Thankfully, two things helped this "short" waiting period.  The first was my brother-in-law who stopped by on his way to work to check-in, and ultimately distract us.  The second was the fact that Olivia's eye surgery was actually a relatively quick procedure.  Olivia was diagnosed with exotropia at about seven months old.  We had gone to the pediatric eye doctor about every three to four months since that time so that he could get a good "read" of Olivia's eye measurements so that when it came time for surgery, he would know exactly how much to tighten the muscles in Olivia's eyes.  This adjustment prevents her eyes from the outlying movement to the outside corners of her eyes and helps her to maintain better control of her eye movements.  According to our doctor, the actual procedure only takes about 15 minutes.  Of course with the pre and post surgery, it is really about 30-45 minutes.

And like clock-work, the attendants in the waiting room called out our names right at the 45 minute mark.  I am not sure if it was because I was nervous, or because I was not paying attention or what, but I couldn't understand why she was taking us to a private room.  WHAT IS GOING ON!?!  Is what I thought in my head.  Why do we need to go to a private room to talk about my daughter's surgery?!!!!  I quickly asked why the doctor needed to talk to us, and if everything was alright.  She told me Olivia was out of surgery and the doctor would be up to talk to us soon.  WHAT?!  I quickly asked my brother-in-law to stay while we waited, not understanding why we needed to talk with the doctor.  Minutes ticked by and my anxiety nearly came to a boiling point.  What is wrong, what is wrong, what is wrong? Then finally, the doctor came in and started to discuss how well the surgery went.  What we should do in the next few hours, what she should eat, how we should clean her eyes, making sure not to get water in her eyes.  What a minute... you mean you wanted to talk to us about STANDARD POST-SURGERY procedures?  Why didn't they just tell me this?  Just say those words, STANDARD POST-SURGERY!!

With my near heart attack out of the way, I thanked my brother-in-law for coming and we took the elevator to see our little Livi.  And there she was, in just her diaper, screaming and screaming.  Tears running down her bright red,  and sweating face.  Post-OP is no fun.  But I was so happy to see her, to have her back in my arms, even if as soon as she was securely in my arms she screamed DADDY.  Either way, she was back, she was okay.  We calmed her down and then gave her a little bit of juice and crackers.  We were able to get her dressed and after about 25 minutes we were headed out the door to the parking lot.  We had made it through the 3 and 1/2 hour experience.  With Olivia safe in the car we headed to the interstate and her scared little cries turned into tired and needy cries.  When we got home we laid in bed together with her head on my chest.  And that's when I could finally breathe for the first time that morning.

5 Hours Post-Surgery

Two years, two months and two days.  Through it all, it has been Olivia who has worked so hard to reach each of the many milestones.  It has been Olivia who has had to be placed in a cast for constraint therapy, Olivia who had to be sedated for the MRI and for her eye surgery.  It has been Olivia who has had to experience everything first hand in this seemingly long journey.  As I sat there in the waiting room, I realized that there is no "I" in eye surgery or in cerebral palsy for that matter.  I can't go through the surgery for her.  I can't take the pain from her, or the redness that has surrounded her eyes for over two weeks.  All I could do was sit there in that waiting room and think about how worried I was and how scared I was.  But in the end, I cannot take this from my daughter as much as I would like to do so.  All I can do is be here for her, support her.  Hold her hand when she cries, encourage her when she looks at me with eyes that say "don't make me do this".  In the end, that is all any of us can do as parents.  Be there.  Support our children as best we can, in the good and the bad times.  Be the parent that smiles at your child, when all you want to do is cry.  Be strong.  Because I can't take away this diagnosis or be the one that walks in her shoes.  But I can be the one that helps her along the way and that is exactly what I am going to do.