Yes, Back In Boston

I never quite saw this one coming. Dr Fay had set-up my followup appointment with a doctor in Charleston  and he said that I should be taking tylenol and moving on in my life in no more than three days after they removed my eye. Boy would that have been nice.

Needless to say on day three I still had not had anything to eat and the pain was pretty rough. I made it back to Augusta where my family was waiting for me. They spent all weekend waiting on me hand and foot. They are the BEST! My mother decided to stay the week with me because the pain was not subsiding the way we had anticipated. We ended up going to Charleston early to get the doctors view on the healing situation. Needless to say i was not very fond of this doctor and he decided that he did not want to touch my eye and recommended I fly back up to boston as soon as possible. That night sitting at the Marriott in Charleston (compliments of Titi Lisa and Rich), I booked a flight the next morning for Boston. My mother drove me back to Augusta the next day and off I went to Boston to find out what was going on. Upon arriving, I saw the doctor who thought that there could be a hemorrhage causing all the pain. They admitted me back into the hospital for pain and had me scheduled for an MRI the next day. My mother flew up the next day compliments of the Statham family to make sure everyone was set straight this time around. I failed to mention earlier but my first time at the hospital was a nightmare and when I was admitted the second time I had to speak with the charge nurse, doctors, patient advocate and social worker to make sure we were all on the same page and that I would get the treatment I deserved.

      The MRI revealed that there had been a hemorrhage which was causing the additional pressure and pain. It had stopped bleeding but there was still a lot of dried blood. There is nothing that they can  do in this situation but wait and try to manage pain. I stayed in the hospital another night and then went to the Marriot where my mother was staying (again compliment of Titi Lisa and Rich).

     I have had pain all over my body but I feel like pain in the eye can be one of the the most debilitating spots. Every time I would try to open my left eye my right eye would hurt so it was ideal to have both eyes closed to help control the pain. However closing both eyes leaves you with very few ways to distract you from the pain ie watching movies or surfing the internet. My friend Maggie a Child Life Specialist and well respected professor in her field tried her darndest to come up with some distraction techniques but even that was a little tough she said.

     Anyway, my mother and I flew back from Boston this past Thursday (compliments of the amazing sky miles of the Summers family) to recover in Atlanta. The pain is still there and never really fully goes away but the eye is still draining the old blood and I am able to open my eyes for longer and longer each day. I am a little confused as to what God is doing right now but I am sure his masterpiece will be revealed one day! Thank you all for your love and support, it means the world to me.

Flying to Brazil?

I was unsure how many more trips I would be taking to boston, and after all this time I had only seen little snippets of the city, so I decided to come up a couple days early to see the sites. I was able to convince my friend Jenna Parker to come along and explore the city with me. Friday morning started with a 4:00am wake-up call in order to catch our flight at 6:00. Upon arriving in Boston it was a beautiful rainy and cold day. We found a fun little hole-in-the-wall called dot 2 dot for lunch, followed by a visit to the JKF Library and Museum, a tour of the Sam Adams Brewery and ending with a great BU hockey game. Saturday after breakfast we walked the first part of the Freedom Trail with a very funny and informative tour guide followed by a stroll through Quincy Market, a picture of the bar from Cheers, a beautiful view of the Boston Harbor, a visit to Paul Revers house, Old North Church, the Museum of Fine Arts, a spectacular view from the top of the Prudential, a visit to Fenway Park, a great dinner at LeContes a stroll through Boston Commons, finishing the day at the Beehive a great jazz bar.               Jenna ended up leaving the next morning and I spent most of my day shoveling snow and relaxing at Jenn Morell's house.

       Monday morning i called the Dr. office to confirm my 4:30 appt. While talking to Rose the nurse practitioner she mentioned that Dr. Fay was going to talk to me about a procedure he had seen done in Brazil.  This left me in high hopes for the next procedure to be done on my eye.  Upon arriving at Mass. Eye and Ear I immediately met with Dr Fay, to discuss my different options.  The biggest problem we were now facing was that the eyelid would not function enough to cover the entire eye when blinking.  However there was a procedure he had seen done in Brazil where they take a slice from inside your lip and cover the white part of your eye which in turn would assist in keeping the eye more lubricated, which in all actuality it would just be buying us more time.  I told him that as much as I would have enjoyed to travel to Brazil with him and trying this procedure I think we both felt that we would still be left a couple step short from achieving our ultimate goal. This has now left us with the backup option. I never really saw it coming this fast but it was time for an enucleation. He said he would give me time to think about it but he knew that it had been in the back of my mind before. Having the procedure done in Boston was not the most ideal location because most of my support system was back in the south. However I knew that Dr Fay knew me and my eye better than anyone one else and it was under his skilled hands that I would feel most comfortable. That evening as I was walking down the streets of Boston I became overwhelmed with emotions and a song came with each of those emotions. I would like to share these songs with you and just let them speak to your heart. It started with JJ Heller
followed by Horatio ending with Christy. As I was lying there in bed I thought to mself, Eric this will be the last time you go to sleep with your own two eyes. Kinda crazy huh? The next morning I woke with a peaceful spirit. I went to MGH a bit early to ask some last minute questions. Dr Fay explained the different options and the route he was going to take. To be honest I am glad he was able to operate today because waiting would have probably eaten me up inside.

Upon waking up in recovery they took me to the 11th floor for the night just to keep track of my vitals and help manage pain. Needless to say this was the part of the procedure that did not go according to plan. They said I would have been able to hop on the plane and be back in Augusta by Wednesday afternoon. Well when Wednesday afternoon rolled around I could not hold anything down, I felt extremely nauseous, and in lots of pain from the inability to hold the pain pills in my stomach long enough. My parents ended up changing my flight so I spent one more night in Boston. Jenn was such a huge help during this process by picking my up from the hospital, filling my prescriptions, and getting bland foods to work on.

Thursday morning I still had not had anything to eat but knew that all I needed to do was make it home sweet home. All of the airport personnel were great from curb to curb. My good friend Ali Griffin picked me up in Charlotte and brought me to Columbia where my friend Jenna picked me up and brought me the rest of the way home. Upon arriving home, there was my sweet little molly girl, my two loving parents and the oh so famous family dog chico! I was a home.............

Round Three

Can I start off talking about something other than my eye for a quick second? Last week I had an amazing opportunity to assist in teaching 150 wounded warriors from the US and Great Britain how to ski down a mountain no matter the disability. It truly was a miracle on a mountain side! The spirits of these young men were not broken but instead they soared 12,000 feet high in the form of skiers and snowboarders.

I was able to teach Jake to ski better on his one leg then I could on two!!!

After an amazing week in Breckenridge, CO I flew to Boston for a follow-up with Dr Fay. Early Monday morning, before the coffee started brewing and the computers started running I waited for him in a semi-lit waiting room. As I was waited and waited, the once fresh coffee became cold, all the computers were now running at full speed, the lights now illuminated every corner of the room, and voices from the other patients filled the room and yet still no Dr Fay. Eventually one of his fellows came to get me and explained to me Dr Fay got pulled away and was unable to see me today. Just the news I was expecting to here... hahaha not really. However she did go on to tell me that surgery had already been planned for the 12:00 the next day. You see, I am beginning to think that Dr Fay has well surpassed the stage of being a human and is now super human. His ability to know what to do without even seeing my eye in the last 2 months is beyond amazing.

Headed under the knife again!!!

The next morning, I rolled off Jenn Morrells couch and headed to Massachusetts Eye and Ear Infirmary. As I arrived, the familiar faces started to appear. There was Joan sitting at the front desk being her typical happy self, immediately making me feel at home. As they called me back there were yet more familiar faces  smiling and welcoming me. Marianne and I were able to get caught up a little on life before the twelve members of the Fay Crew started rolling in. Each looking at my chart but not saying much.  Once I had been rolled into the OR it was then that I was finally able to "talk" to him.  I put talk in quotes only because I had about two minutes before everything he was saying would become a big blur. I stopped him mid sentence and said "you know what, I am headed to bed but I will talk to you later" and out I went. Upon waking up the familiar faces were back. Two of the kindest nurses where there assisting me as I awoke from my slumber. Fresh perocet, apple juice, and crackers where there waiting for me. I must say its not always easy going into surgery by myself but when I know there are prayers out there and amazing people inside it comforts me more than you will know.

The two angels Sylvia and Katie

So it turns out that some scar tissue near the lacrimal sac started to slip from under the lid and needed to be removed as well as separated from the eyelid. This should be the final separating process to take place under the knife. Dr Fay also took out the symblepharon ring and put in a full large contact lens that will provide more spacing and less of a chance for anything to slip or stick again. I will head back up for the follow-up in a couple weeks. He wants to keep the eye sown shut a little longer than normal for more healing time. I would go ahead and state what the next step might be but I am not even going to guess. Its all in the hands of the Big Cheese and the Even Bigger Cheese!!!

 

Milestone

Well guys not much to say on this one. My day started with a 12:30 am  drive to Charlotte and ended 18 hours later with me sick as a dog on a friends couch in Boston. Everything in-between was just a big long blur.

THE PROCEDURE

There I was, sitting in a sterile room, listening to Tchaikovsky, Bach, and Gershwin do what they do best, help me relax.  It started with the doc using "numbing drops" to alleviate the pain. As he poked and prodded at my eye I would unexpectedly twitch or jump each time. He asked if I was nervous and I just said "no, it just might be a little tender". Maybe its just me, but there is something about watching an instrument come towards your eye and when contact is made I would think it would make anyone a little jumpy. Its like watching a gnat fly into your eye and just letting it walk around on your cornea without blinking or twitching........just doesnt seem natural. Anyway, once he started getting deep into the pocket of the lid the pain began. It was clinched teeth and deep breathing from then on out. I would like to think that my pain tolerance is now at a whole new level! "Almost there" he said. Just at that moment he took a needle to the eyelid to numb it enough to place a deep slit to access more of the eye. Out came the piece of silicone and in went a symblepharon ring. This is like a giant hard contact lens with a hole in the middle of it. It was placed there to keep the spacing that was developed between the eyelid and the eye and to keep the lid from adhering back to the eye. This was never an option before. 

the symblepharon ring

As I wiped the blood from my eye I looked up to see that Dr Fay was still in the room. He was not only still in the room but he was giving me a pep talk. He talked about how we had hit a milestone today and that we would be able to move on with manipulating the eyelid itself. We talked about that up until this point if I would have had an enucleation the orbit would not have been able to support a prosthetic and I would have had to have an orbital exenteration. We talked about what other procedures might look like and how much more he can do to help save the eye. We are both uncertain about the outcome but at the end of the day we want to walk away knowing that we did everything possible. 

Whats Next???

He wants me to go back up in a month to see how the ring is working and how the eye is healing. If there is something that he wants to do immediately then he will throw me in the OR the next day. Until then its the continuation of prayer, the saving of money, and the dreaming of skiing as winter nears!!! 

Interactive Part!!!!

 For those of you unsure as to what an enucleation and an orbital exeneration is I would encourage you to look it up on google and defiantly check out the images that are wicked cool. (did I just say wicked? I think I am spending too much time in boston) I thought that if I posted some of the images I might lose some of my readers!

We love to fly and it shows!!

This morning, after crashing at a friends house in Charlotte (stacey "the amazing" backstrom) I jump on a plane and headed to boston for the big results. The people at Dr. Fays office really are a great group. When I arrived I immediately got the general work-up with a new resident and then sat waiting anxiously for the man of the hour to walk in. When he walked in he was his normal self asking questions like "how does it look?" when really he is the only one who will be able to tell. He goes on to tell me that  the spacing between the eye and lid (fornix) looked really good. However the silicone that he sutured to my eyelid never slid out but instead sank back into my eye. The pain to remove it would be to much so he will need to put me under local anesthesia to take it out.  Mixed emotions were flooding around inside of me for sure but this was neither good news nor bad news just news. Dr Fay in his own way referenced his response from the letter. He talked about how he knows I am looking for answers and he is still determined to give it his best shot. It was very comforting to hear those words to say the least.

     So its off to the surgical coordinators office to schedule yet another procedure. I knew that there were going to be a couple more operations done but since I have hit my out-of-pocket deductible I was hoping to get in as many procedures before the end of the year as I could.  After talking with my favorite surgical coordinator she snuck me in a spot next thursday! She said "they might not be happy about it but you are one of my favorites and the real next available is in December!" So for me its back to booking flights and building up those sky miles!!!

                                                      Made it to Boston in a single bound

Rough Recovery

The recovery from surgery was a little tougher this time around.  For the first week every movement of my eye would be excruciating. I spent a lot of time in prayer because my eyes were closed most of the time. My Aunt did the best she could with me under the circumstances. I was unable to enjoy walks on the beach and explore New York so instead my aunt had a little birthday party for me at her place and invited over some of her friends to cheer me up. Percocet did not work for the first couple of days but after a couple of days and doubling the dose it soon became my best friend. The days before leaving went much better and I was able to enjoy some of the time with my aunt and the incredibly cool Fitzgerald family who provided me with some great dinners including the best pizza in New York! The day before my follow-up I went and had an amazing crab and lobster dinner overlooking boston and the harbor with my good friend Jenn Morell. The live music for a tuesday night made us laugh because of how bad it was but the food was great and the company was even better. The next day I hoped on the T and headed to my follow-up. Dr Fay described to me the procedure that was done. Basically he took an artificial amniotic membrane and draped it over a piece of silicone. He then took that piece of silicone and sutured it as high up into my eyelid as possible in hopes that it would keep the eyelid from re-adhering to the eye. He said that it looked good and only time would tell. I got back to Augusta Thursday with minimal pain and work was fine that day. However, the next morning was one of the most painful mornings I have ever experienced in my life. It literally felt like someone had torn off my eyelid, poured alcohol all over it and then took the palm of their hand and tried to push my eyeball into the back of my head. It took everything I had to get in the car and make it to the E.R. I ended up going to a optometrist friend of mine. I was able to be seen immediately and was given multiple antibiotics and steroids. They are not sure what it was but all that really mattered was that the pain had been relieved. I am still taking percocet to take the edge off which has been a huge help.

My New Best Friend

 I am headed back up to see Dr Fay on October 20. We have gotten to the point that if recovery goes as planned then we will move to the next stage, however, if this procedure did not work then there is nothing else he can really do. Either way I am not giving up!!!!

Round Two

Okay so I am going to try and make this blog as coherent as possible while I enjoy the pain pounding on my eye. After all pain is weakness leaving the body right?

The flight into Boston went smoothly and I could not wait to get round two of "Operation Eyeball" on its way. I met up with an old camp sunshine friend Jenn Morrell for a good dinner, great conversation and an amazing place to sleep. On the day of the surgery  I tried sleeping in pretty late in order to avoid hunger pains. I had not eaten since 9:00 the previous night and was not allowed to consume anything until after the surgery which in total was about 24 hours.  Upon arriving on the 9th floor I was taken back right away and was actually called to the OR an hour early. I met some of the same sweet people that remembered me from last time which made it much more enjoyable. However then drama walks in the door. In comes the doctors Fellow making rounds with a Resident. I have still yet to figure out why these medical professionals inform their students more than the actual patient on details of the surgery but perhaps I will never know. Anyway his Fellow comes over to me, looks at my eye and discusses a plan that I had never heard before with the resident and then walks off to see the next pt.  Soooooo come to find out the plans had changed. 

Originally Dr Fay was going to remove fat from my stomach and place it in the orbit for more structure followed by releasing the upper lid by another 10mm and separating the lower lid from some of the adhesions. Unfortunately, I thought I felt something different this past week, but my eyelid had started to fuse back to the eyeball after the first surgery. So now the new plan was to continue with separating both the upper and lower eyelid as much as possible and doubling up on the artificial amniotic membrane to hopefully prevent further adhesions.  

From what I have heard things went well. They stitched the membrane in the top of the eyelid and pulled down the full eyelid in hopes to stretch and form better closure for it. I will let you know how it turns out next wednesday. In the mean time I will just be enjoying time with my aunt in New York and trying to alleviate this pain. My eye feels a lot more painful this time around but maybe thats a good thing. Thank you all for your prayers and kind words. I know HE will continue to work in my life no matter what the outcome is.