Tag Archives: eye injury

Need to know post-eye surgery

I was attending the International Coatings Exhibition in Charlotte, NC for work when I got the somethings-going-on phone call. We were four months post-eye ball saving/retina reattachment surgeries with one month remaining before cornea transplant. The school called my husband to say Mik was complaining about pain in his eye. My husband brought Mik home to take a nap and see how it would go over the next couple of hours. Mik woke up still in severe pain and his eye was red. Not pink like the standard infections most people get. His eye was red. The hubs took Mik to the retina doctor’s office but our usual doctor wasn’t there. The other doctor wanted to take Mik in for surgery right away because he couldn’t get him to open his eye. Finally, after a slim glance and an agreement from my husband to wait until I got there, they waited till the next morning. It was a mistake or maybe it was too late by then anyway.

I arrived late at night and climbed in bed with Mik to comfort him. All night, I listened with fear and heartbreak to his moans. His eye was causing so much pain. We thought it was just a loose stitch that needed to be removed.

It wasn’t just a loose stitch. It was Endophthalmitis (a serious intraocular bacterial infection requiring immediate medical attention) caused by streptococcus pneumoniae. The doctor removed the stitch and injected a cocktail of antibiotics into his eye. Two days later, he was admitted to the hospital with orbital cellulitis for IV antibiotics of vancomycin and another that I can’t remember the name of. He stayed in the hospital for five days, was treated at home for another week with injectable vancomycin then was treated for 6 weeks with vancomycin drops.

Streptococcus pneumoniae is a common bacteria but it is an aggressive bacteria. Either Endophthalmitis or Orbital Cellulitis can cause vision loss. Mik had both, at once. Mik lost all his chances of reversing the damage his eye injury because he got these infections.

What you need to know and watch out for after eye surgery:

1. The eye is one of the slowest healing body part. Four months after the initial injury, Mik’s eye still wasn’t stable enough for cornea transplant. His eye was actually healing well and looking fantastic with some vision capability already. Plan on the healing to take six months or more depending upon the type and number of surgeries needed.

2. Do not let any water into the eye, no matter how inviting and sanitary that pool might look. It was hard not to let an 8 year old have fun. I realize now just how dangerous hot tubs, swimming, even showers and other activities could be to someone in his situation.

3. Wash hand, sanitize hands, and never let them near the injured eye. We all know that our hands carry lots of bacteria. Mik was prone to rubbing his eye, probably because of the loose stitch. That stitch was also most likely the entry point for the bacteria. Streptococcus pneumoniae bacteria is a common bacteria found in schools and other public places.

4. If the eye appears RED (not pink) seek immediate medical care and press for surgery to investigate for infection. We are familiar with ‘Pink Eye’ or conjunctivitis. Endophthalmitis appears a deeper, darker red and is called ‘Red Eye’.

3. Seek immediate medical attention if there is any pain. Better to be safe than blind. Timing is critical.

4. Endophthalmitis and orbital cellulitis are sight threatening infections. Time matters. The longer it takes to get treatment, the more damage that is done. Keep in mind that Mik was on antibiotic drops when he got infected. The nearly completely healed retina detached again and suffered so much trauma that Mik could no longer detected light.

I can’t stress it enough. Time matters. Don’t wait.

This is a great reference website for eye injuries.
Eye Injury MD

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Scleral Shell Update

When it was determined that my son’s eye wouldn’t turn out to be a functioning globe, we started the process of getting him a scleral shell.  I didn’t know anything about scleral shells or who made them (Occularists) or how it was done.  I found very little information on the internet.  So, I decided that I would cover Mik’s quest for a normal looking eye in this blog.  If you came here because of the scleral shell tags, you’ll want to read all the posts under my eye injury category.   

Mik wore his shell through the end of the school year.  After one trip to his retina specialist in the late spring, he was put on antibiotics because his eye was red and gunky.  His eye didn’t seem to clear up with treatment so I called the Occularist to find out if there was something we were doing wrong in cleaning it, etc.  The lady that made our shell was no longer at this office so we went in to meet with Jim. 

I’m a little irritated to find out that the quality of Mik’s shell was not as good as it should have been.  According to Jim, the redness and gunk was more likely to be from chronic irritation because the shell was not as smooth or as well polished as it should have been.  Jim did a re-polish and sent Mik home to wear it for a while to see if all was well.

Truthfully, Mik hasn’t been wearing it because it is summer and he is swimming all the time.  We chose to take it out while he is swimming and its been easier to just not put it in at all.   The couple of hours he did wear it over the summer, it seemed like the situation wasn’t any better.   His eye turns blood-red when he wears it and he started complaining about it feeling like it was pinching him. 

This time when we returned to Jim, he decided to grind down the edges and suggested that we gradually increase his wearing time until we get to 6-8 hours a day.  Just like with contact lenses, this will trick the eye into accepting the shell as normal and will not get irritated when the shell is in.  The adjustments that Jim made to the edges of shell makes it smaller so it doesn’t sit so far under the eyelids.   

I want Mik to have a prosthetic that he is comfortable with and feels good about wearing but I gotta admit that I’m a little irritated that we are having to come back for so many adjustments.  Maybe this is normal but it didn’t seem like this was communicated to us before.  Perhaps I am a little more aggravated because there are only a handful of occularist in the country so we have to drive over an hour for every appointment.  I’m just glad we don’t end up waiting for hours in a waiting room like we do when we see the retina or cornea specialists. 

I must remember that these are minor things.  The shell still looks fantastic and I even had trouble remembering which eye to take out today.

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The Motivation For Today (And Yesterday and Tomorrow)

As a result of a serious eye injury that my son suffered on New Year’s Day 2010, I have experienced a variety of phases and emotions over the past year. I was sad, angry, relieved, and felt guilty.

Why guilt, you ask? Why would I feel guilt when my son has become blind in his eye and now wears a prosthetic shell?

I termed my feelings as Survivor Guilt. I was so pleased with how my son’s life will turn out. He will do anything he wants, no restrictions. Do you know how many children we saw on New Year’s Day 2010 in the University of Michigan hospital that might not ever get to live a normal childhood let alone… leave the hospital? As crushed as I was about what happened to my son, I felt equally blessed that his situation was so MINOR.

I beat my feelings of sadness then I beat my feelings of anger at the bacteria Streptococcus pneumoniae. It was about mid-year when the survivor’s guilt really began to kick in. I thought I was feeling guilty that our lives had come out nearly unchanged.

In December, I wrote a post when I was feeling very overwhelmed with the world, my binges, and my survivor’s guilt. I was doing everything I could to pay back the present that my son… that I was given but it just didn’t seem to help me with the guilt. As good as it is to help others and give what I could it was not helping me to come to terms with my guilt. I spent the year eating for emotional comfort, eating to relieve my anger and as a crutch toward my guilt. It didn’t seem like I could go more than 5 days without binging on something. As positively as I started December, I found myself deep in depression by the middle of the month. It was as if it got worse the closer we came to the one year anniversary of the accident.

Just before Christmas, I struggled on a long run. It was hard to run and I just wasn’t feeling it. I took walking breaks as a compromise. As with most runs, my mind sifted back and forth through a variety of topics. The most popular topic was my survivor’s guilt and what could do to pay it back to the universe. I thought about how lucky we were that our son wasn’t one of those kids who were so sick they had to be kept inside of sterile rooms, even had sterile tents around their beds. We were lucky to have a child with a healthy body.

That was it. A healthy body. I was feeling guilty because I have a fully functional, capable and healthy body and yet I was not appreciating it the way that I should. I wasn’t exercising right, eating junk food, pouring in the sugar and over indulging on alcohol. Not only is my kid lucky, I’M lucky. I’m lucky to have a body that is strong, disease free, functional, and capable of doing more than I’ve imagined.

What I realized in that struggling run is that in order for me to pay it back to the universe I have to care for and appreciate the gift I was given, my own healthy body. I have no diseases and I’m damn lucky I don’t.

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A New Eye: Steps 3 – Complete

Mik has been wearing his Scleral Shell for almost a month now. It looks amazing. You can read about the first steps here and how we got here. These posts are primarily for those who are in need of information on prosthetic eyes.

Now, a discussion on the Scleral Shell process.

Step 3. – Color Match
After Mik wore the clear Conformer for a few months, we went back to the Ocularist to begin building the custom shell. Our Ocularist , Bev, first matched the color of the white part, the sclera, then picked “button” that was similar in color to the iris of the good eye.

When I first met my husband, I was enamored with the color of his eyes. I thought his dark blue eyes looked like a stormy sky. I was pleased when both boys were born with the same color. Turns out, I don’t know anything about eye color because they are grey not blue. I guess I was still right about the stormy sky part.

Step 4. Open That Lid
Bev added some wax to the front of the clear Conformer to determine how much thicker the shell needed to be to open Mik’s eyelid enough to appear normal.

Step 5. Custom Paint Job
Custom paint jobs aren’t just for cars and motorcycles anymore, Mik has a custom painted eye. A week after selecting the starting colors, Bev channeled her artistic talents to create a master piece.

She held a white shell with a blue-grey center in her hand. I could tell from the shape that this was the opaque shell she had poured after our last meeting.

The first step was to apply super thin red fibers to represent the redness and veins in the corners of the eyes. Then she studied his iris under high light, low light and at angles. She measured his pupil and stuck a black spot in the center of the shell.

The custom paint job took about an hour then we were free to head home for the night. Meanwhile, Bev gave the shell a final clear coating to give it the glassy-eyed look.

Step 6 – Drive It Off The Lot
The next afternoon, we gave the Scleral shell a test drive then our final approval. It seemed like it took all of five minutes and five pictures before we were in the car taking the masterpiece home.

Completion – Mik wore the shell all through Thanksgiving. The reviews were five stars and two thumbs up. At first, people didn’t realize that something was different because it just looks like it should. My nephew came into the bathroom while I was putting it in Thanksgiving morning. (I am in charge of putting the shell in until Mik is confident enough to try it) When Mik showed my nephew what he looked like before and after, my nephew exclaimed, “YOU LOOK AMAZING!”

Most importantly, he looks like himself.

Before

After

After

** Bev may have to add a little more thickness to prop the eye lid up but no one notices it but me.

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Not A Word In My Vocabulary

Blind. It is not a word I use to describe my son. I say, “He’s lost all vision in his left eye.” I have to say all because some people just don’t grasp that he is, well, blind in that eye. But, to me, he’s not blind. He sees just fine. He sees as well as you or I do…although, he did inherit the in-laws poor vision. Still, I don’t consider him blind.

The school has asked us to have his doctors fill out an ocular report because it may get him some additional resources for school. A friend who grew up with hearing impairment had recommended a similar thing to us, so, I was all for it. After procrastinating, forgetting then being reminded by Mr. F, I finally took the form to the retina doctor’s office to get it completed. I was hoping that I could just drop it off at the desk and return a few days later with BLI (blind) and PRO (prosthesis) written in the line for left eye.

Only, the form also requested the near distance and far distance vision of the right eye. It requires refractivity or some such medical term. So, the doctor’s assistant firmly stated that they don’t do that kind of thing there so they could not fill it out. I tried to protest. I asked if they could just fill out BLIND. It was to no avail because this lady was unmovable. I started to walk away then started to go back. Away. Back. Away.

From her point of view, and likely the agency that would be reading the report, the form needs to be filled out completely. For a moment though, I was stumped. Where do I go? What to I do? The doc that knows he’s blind doesn’t know his prescription but the doc for the prescription doesn’t know Mik is blind. The cornea specialist probably wouldn’t be able to fill it out either. The Ocularist isn’t even a doctor.

Sitting there in the car, it overcame me. Why does it all have to be so complicated? I just want someone to say he’s blind but I have to jump through hoops to get that. Everything on this journey has been about jumping through hoops. He’s blind, for goodness sake! He’s blind.

That’s when I stared crying. He’s blind.

So all this time I’ve been “really strong” about the injury and infection. I treated the loss as something insignificant and signed the kid up for gymnastics, told him to ride a bike, and jump into the pool. I call his prosthesis his “eye” and take it in and out everyday. Then a silly little form comes along that makes me cry like a toddler whose scraped their knee after falling on the concrete sidewalk. Perhaps, I haven’t really dealt with this loss after all.

When it is all said and done, I stick by my original statement. I don’t think of him as being blind. He sees just fine. You can call it that if you want but it’s not a word in my vocabulary.

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