The Case of the Missing Eye

Oh I sure do hope the boy gets my humor when he grows up and reads the crazy things I write :)

I’ve had several people ask me to explain  the whole new eye process again because it’s confusing and also because some families are thinking of adopting children with anophthalmia (missing eye) or microphthalmia (small eye).

When we met RJ we knew his right eye was missing but honestly we really didn’t know what that would look like, what it would mean medically or anything.  We love to jump into adventures blindly or more importantly, God loves to keep us in the dark so we’ll jump ahead because most of the time we would probably say “I can’t handle that.”  I’ve learned to ask few questions and deal with things as they come and it’s worked out well so far ;)

So basically he had an eye lid and it mostly stayed closed but when it did open there was just pink tissue right behind the eye lid, looked kind of like when kids used to turn their eye lids inside out to freak people out.  There was no dented in pocket where an eyeball would sit because there had possibly never been an eye there since birth.  Looking back now I can see how much smaller that side of his face was than the other because there was no eye in the socket so the cavity was small and the bones grew closer together.

We started after he got home by of course having him checked out by our beautiful pediatrician (Hi Amberly!!) and then had him seen by a pediatric opthomalogist.  We already had one that we loved who had done surgery on Laila’s eyes so it was a no brainer on who to go to.  We went for our first appointment about a month after he came home.  She checked everything out and said she thought there might be a tiny undeveloped eye back under the flesh in the socket.  She sent him for an MRI to see if there was any other damage or something further that may have caused the eye not to develop.  She thought on the MRI that she did see microphthalmia but surgery confirmed otherwise that what they thought was a tiny eye was actually only a piece of darker tissue in the cavity.

Then she referred us to an Ocularist to start the process of getting a prosthetic eye.  This medical field, or more accurately described as an art form, is amazing.  She fiddled with a piece of plastic and melted wax and shaped and said come back in a week and I’ll have it all done for you.  One week!  It was great!  It moved and looked like a real eye but the only problem was that since he hadn’t had an eye in there, the socket could only handle something pretty small.  We spent the next three months going back every 3-4 weeks to have the size increased.  We had planned on it taking 6-12 months of increasing the size of the prosthetic before implant surgery but it only took three months before his body was ready!  His body took so well to the size increases.  Basically they were making the prosthetic rounder and rounder to push back that tissue to make a pocket behind his eye lid like yours and mine.

For surgery they slit open that tissue, reconstructed the eye socket and then put a silicon ball in there.  The tissue is then stitched back closed.  He has not been able to where a prosthetic over it all summer because the stitches needed to heal.  If there had been a small eye in there they would have removed it but there wasn’t.  Also if there had been, they would have had muscles to attach to the implant which would have held it back in the tissue better and given him more orbital movement.  There was a risk of his body rejecting the implant because there were no muscles to attach but to me it looks beautiful and I don’t see any sign of rejection.  We would see the incision opening back up and see the bright white ball.  He goes back Aug 1st to have it checked and to get working on the creation of what he calls his “bigger, bigger eye.” :)

Not gonna sugar coat, surgery was rough.  You can explain and explain to them what’s going to happen but it’s still traumatic for child to have any procedure and let alone a very painful surgery.  He brought along his friend Kate (and her mom who is forever dubbed Happy Birthday Melissa by him).  This helped tremendously because they kept each other busy during pre-op so there wasn’t too much anxiety although the moment we walked into the hospital that morning he grabbed my hand and said “I never leaving you right?  Never go back to India?”  We had been there several times and he never said anything like that.

I told the staff over and over that he was adopted and that he should not wake up in recovery without me there.  I was terrified that he would wake up and think I abandon him.  Well, guess which momma pushed her way back into the group recovery room when I heard my son back there screaming.  HIPPA Shmippa, my baby needed me!  Come on let’s not pretend that patient privacy even exists anyway…. yeah, no one can hear through those paper thin curtains or the doctors that discuss your case in the hallway with all their residents.  (Not you Amberly and Leann, you’re awesome :) )

One HUGE bit of advice:  ask for pain meds.  The Ocularist had advised me of that and I’m glad she did!  They had given him nothing until I asked them to.  Then it was tylenol.  Then it was morphine.  Then more morphine.  Then more.  Yep, let me gouge your eye out and see if you don’t need pain meds.  Good grief.  I guess they just wait and see if the parents ask.  He took a very long time to come around and wake up but finally did a little and drank some apple juice and we were on our way home.  Thankfully Melissa drove and I sat with him.

And then the vomiting…… and more vomiting.  He couldn’t keep anything down and he was still in a lot of pain.  I came home with a script (which again I didn’t get until I asked for it) but it wasn’t cutting it for him.  They already had a follow up scheduled for the next day so I waited it out until then and sure enough, he got admitted to the hospital.  Poor buddy was so dehydrated and in so much pain.  The dr said it used to be a mandatory three day stay in the hospital for this surgery because it is so painful but with insurance the way it is today they make them send the kids home and see how it goes.  He was so lethargic and at some points unresponsive.  His heart rate was at about 68 which I later found out is what he is normally at when he is in his deepest sleep.  SO scary!  Several hours later he got fluid in him and pain meds and he started perking up.  He still vomited and had a hard time that evening and the next morning but then he started keeping food down and they sent him home the next night.  What a crazy couple of days that was!

He’s doing great now with it and he’s just the best boy ever with the eye and listens when I tell him not to touch it.  He’s very much looking forward to getting a new prosthetic again so he can have two eyes and look like everyone else.  He should get it right before school starts so the timing of everything worked out perfectly.

I know that was a lot of info and some repeated but I wanted to make sure I got the info to the families who wanted it :)  Any other questions just let me know :)