A Bubble...

July 24, 2014

In a previous post, I referenced the fact that we never seem to be able to go on summer vacation without there being some kind of crisis with Emily.  Why can't this poor girl just enjoy summer without having some major problem ruin it?  Maybe its a coincidence, but I honestly doubt it.  Last year it was a trip to the local ER for a virus that manifested itself  in the form of a fever and rash. This year, our vacation was turned upside down by a bubble.

On the first day of the year, we sat down as a family and wrote a list of things we wanted to do during 2014...a bucket list of sorts.  Our goal was to cross off as many of those things as we could, realistically speaking of course.  One my contributions to the list was to go crabbing while we were down in Ocean City.  I used to do it all the time with my dad as a kid, and we hadn't really done that yet.  The kids like to go surf fishing with my dad while we spend the day on the beach, so crabbing on a chillier, overcast day seemed to make sense.  Why waste a good beach day right?  On this particular Thursday, only having 2 full days of vacation left, we decided to try a few different crabbing spots.  Jason took the kids for a bike ride on the boardwalk in the morning.  I didn't go on the bike ride because I wasn't feeling very well that day, so I went with my parents, sister and sister in law and found a small dock near the marina to set the crab traps.

Jason and the kids took a while to get there, and by that time we had already caught a few crabs.  The kids were so excited to see what we caught, but Emily was afraid to look at them too close.  She was standing next to me while I was sitting down on the dock, and as I looked up at her face, I saw something that immediately stopped me in my tracks and made my stomach turn.  A bubble...on the center of Emily's right cornea.  I wanted to include a photo of the bubble so everyone could understand what we saw, but I lost all the photos from my phone.

It was like someone punched me in the stomach and stabbed me in the heart at the same time.  Its that feeling you get when you know something really bad just happened and you have absolutely no control over it.  You have no way of changing it or making it go away.  You can't fix it, un-do it, go back and time and prevent it or go into the future to see if everything will be ok.  It's the kind of moment I have had over and over and over again since Emily was born.  I felt my stomach turn, my heart begin to bleed internally and tears prick the corners of my eyes.  But I had to hold it together.  I didn't want to alarm Emily, and scare her. I also didn't want to draw attention to the problem before I could process this in my own mind.  I asked Emily if she could see ok, if her eye hurt, or if anything felt wrong to her.  She said no, it didn't hurt and yes she could still see fine.  I took a few pictures of what I saw, and my sister saw me wiping away my silent tears. She asked me if I was ok so I quietly told her and Jason what I saw and we all knew it was bad. We finished crabbing and headed back to the house.

When we got back to the house, I gave Emily extra antibiotic eye drops just in case there was some kind of bacterial infection going on.  Speculation began to grow about how and why this was happening.  Did a piece of sand get in her eye?  Was it the salt water?  Did she get poked by a beach toy or sea shell? Was it caused by severe dry eye from the wind?  Was her eye pressure elevated?  All kinds of theories were being considered.  I put a call into Dr. Zaidman, her cornea doctor, and of COURSE its after hours and no one is in the office.  I called the emergency number and had them page the Ophthalmologist on call. Because I was trying to keep the problem from becoming an all out vacation ruining crisis, I didn't alert my mother to what was going on.  I needed to take care of this without the added anxiety and second guessing.  I was doing what I needed to do, call and talk to her doctors.  Now I just needed to wait to hear back from them.

We all went about the task of preparing dinner; the crab we caught, a nice steak and other seafood we bought at the market.  Our traditional seafood dinner while at the shore was something we always looked forward, I didn't want to ruin it for anyone.  So I put a smile on my face, poured a glass of summer wine and tried to hold it together.  When the phone rang with a NY area code, I went out to my car and took the call.  I didn't want anyone hearing this conversation.

I gave the resident ophthalmologist a brief run down of Emily's history and then explained the bubble that I saw.  He gave me his cell phone number to text him the picture I had taken, so he had a better idea of what I was talking about.  We hung up so I could send the photo and he said he would call me back.  Later on, he called again and explained that it was hard to determine what was going on without actually seeing her...(no shit, I hate this answer...for gods sake just tell me what you think it could be and if its an emergency situation or not).  He went on to say that there could be a number of reasons that this occurred, and that the best way to help her was to take her somewhere to be seen. Because we are 3 1/2 to 4 hours away from the doctors and hospital I trust, we had a decision to make.  Either we could take her the CHOP (Children's Hospital Of Philadelphia) which was about an hour and a half away, or wait until the next day and Dr. Zaidman's office would call me with the names of doctors in the area that he would recommend going to.  Dr. Z would call and speak to whoever we decided to see.  The resident left the decision up to us and told us to call him back if we decided to go to CHOP so he could get in touch with someone there.  Otherwise, we would hear from the office in the morning.  Obviously he didn't seem to think it was a true emergency situation, or he wouldn't have given us a choice.  

I hung up and immediately fell apart.  A wave of various emotions washed over me in a matter of seconds.  I was scared for Emily and what this could mean for her vision.  But there was a part of me that felt defeated, disgusted and surprisingly angry.  Our family vacation was over. Once again, we couldn't just enjoy our trip.  We couldn't escape the reality of Emily's medical problems. There was no escape, there was no vacation from her eye disease, we would never be free from it.  It consumed our lives and that made me more angry than words can express.  It made the decision I had to make, both for Emily and our family, even more difficult.  Was it selfish of me to just want to finish our vacation and deal with this when we got home?  It made me sick to think we would be spending the last full day of our trip in a hospital or doctors office instead of on the beach.  I mean physically sick.  I wanted to throw up, and I almost did right there in my car.  I was sobbing uncontrollably, banging my hands on the dashboard out of anger and frustration, desperate to wake up from this nightmare.  A large part of me was sad that either I would have to take Emily by myself and leave Jason to spend the day with the boys, or that Jason and I would both go, therefore depriving them of spending the last day on the beach having fun as a family.  Or, a third option was to just pack up, leave a day early and drive Emily straight to Dr. Zaidman's office the next day.  Why would I waste time and money to go see doctors who don't know her, needing to explain her entire medical history to someone
WE don't know...someone we don't trust.  Ending our vacation early was a real option for me, I didn't want to do it, but I would if it meant doing what was best for Emily.  I must have been crying so loudly that someone, I honestly don't even remember who, came out to the car and opened the door to see if I was ok.  It might have been my sister or sister in law, it could have even been Jason. I really don't remember.  All I remember is how I felt...helpless.

I eventually calmed myself down enough to be able to walk back inside.  I found Jason and we discussed what our options were.  We were leaning towards waiting until the morning to either find a doctor or just go home early, going to Philadelphia seemed like the last thing we wanted to do. But then...I looked at Emily's eye again, and the bubble was gone.  Just Gone.  She wasn't in any pain or discomfort and she was acting fine.  WHAT JUST HAPPENED??????  Did the extra eye drops help to alleviate the problem?  That's the only thing we did differently, its the only thing that made sense.  My heart suddenly didn't feel so heavy...and maybe...just maybe,,.it meant that we didn't have to end our vacation early.

We had a very nice dinner...and I tried to enjoy the rest of the night to the best of my ability.  A bottle of wine helped.  A lot.  None of us (who were aware) could believe that the bubble we all saw, was no longer there.  We all assumed that if it had popped, that she would have been in pain, or we would have noticed real damage on her eye.  But it looked fine, or at least as good as it did prior to the bubble appearing and she never complained about it hurting.  It was one of the most bizarre things any of us had witnessed.  I just prayed it wouldn't come back again...

The next morning, her eye looked ok, no bubble.  Dr. Zaidman's office called me with the names of somewhat local doctors that we could go see.  But when I told Daria that the bubble disappeared within an hour of giving her the extra eye drops, she was shocked.  She relayed the information to Dr. Zaidman who agreed that if the bubble didn't come back that it would be ok to just wait until we came home to have him examine her. If he felt she still needed to be seen, we would have just come home instead of involving another doctor.  But he was ok with waiting until the following week as long as the bubble didnt come back.  While I was relieved to think we could try and have a nice end to our trip, I knew it would be jaded by the prior nights events.  I insisted she wear sunglasses at all times while she was outside, and if we went to the beach, she would wear goggles in the water.  We tried, and I use the word loosely, to have a normal day.  I fought off tears most of the day and was checking her eye constantly.  I struggled with just "letting her be a kid" playing on the beach.  She wasn't a normal kid, she doesn't have the luxury of throwing caution to the wind.  At any given moment her life can be turned upside down.  Its a difficult balance between the need to shield and protect her from the dangers that could jeopardize her vision and the thought of if she loses her vision tomorrow, she will never be able to experience life the same way again...

The bubble didn't return before we left to come home, so I had hopes that everything would be ok and that it was a one time freak thing.  Little did I know that as we were trying to enjoy the last day of bright sunshine on the warm sandy beach, the black cloud of 2014 was just beginning to form over our heads.