Eye Patching

When Tommy has his contact in we have to patch his "good eye" in order to make his "cataract eye" work hard.  Babies LEARN to see starting at birth- and since Tommy's eye was covered in a cataract, that eye didn't start learning until he got his contact.  The contact acts as the lens to focus images.  He needs to use it in order for it to grow stronger.  We are hoping that he will have at least some vision in that eye when he gets older.

We had ordered some patch stickers from a really cool website http://eye-doodle.com/.  This is a company started by a mom of a child with cataracts.  When I came across this site, I just HAD to order them and support anyone who is trying to make it easier for kids who have to patch.  As an added bonus, the owner has GREAT customer service.  The patch stickers came quickly and were adorable!!!

We have to patch for 1-2 hours each day (we were told to do it 1 hour for each "month" he is old).  He doesn't love the patch- but he does OK. It ends up being on for about 6-8 hours each day to get in 2 hours of awake time!  The worst part is that it irritates his skin and leaves red marks.  He also is on atropine drops right now to train his pupil to dilate.  If I put the drops in and the patch on at the same time, he gets really frustrated since I imagine that he cannot see!  If I do the drops early then patch a little bit later, it goes much more smoothly.

Tommy and his patch (complete with eye-doodle sticker!)

Another not-so-fun part is explaining what "happened to his eye" to so many people.  I don't mind them knowing, and I don't mind explaining.  The only problem is that it is hard to explain an infant cataract in the limited amount of attention span that most people have.  And, do people really care?  I tell them anyway and just get amused when their eyes start to glaze over.  Worse is trying to explain it to kids that we see at our daughter's activities.  Interestingly, I have found that people are much more likely to ask me what happened if he has a cute patch on.  If I don't put a sticker on the patch, they often look away and don't engage me in conversation.

What is a Cataract?

To take a step back for a moment (I realize that I haven't addressed this yet):
A cataract is a cloudiness of the lens of the eye.  We often think about old people having cataracts and having them removed rather easily (The whole procedure can be done in 20 minutes in adults).  This is a link to a great short (< 2 min) video on pediatric cataracts.http://youtu.be/gzsSjUr7iNc.  He describes it much better than I ever could!

First Day of Contacts!

The contacts finally came and it was time to put them in.  Tommy's dad had put the contact in fairly easily in the office when they were showing us how, but it had been over a week since that tutorial.

We had everything ready, he took the contact out and wet it, just like he was shown in the office.  He folded it like a taco just as he was told.  He pushed his upper lid up and tried to put it in... and no go.  Tommy screwed his eyes up tight and started fussing.  Tommy had gotten very tolerant to the eye drops and eye ointment he's had to use over the past two weeks, but when he scrunches up his eyes, it is nearly impossible to open them.  This was one of those times.  The stress was palpable- I felt terrible for both of them.  I could only imagine how frustrating it was for his dad- and poor Tommy probably felt tortured.  About 5-6 tries (and much stress) later, he tried and it was in- or at least it wasn't on his finger anymore.  But, we couldn't see it in Tommy's eyes.  (It was hard to see anything since Tommy was closing his eyes up tight).  We let Tommy have a short nap and looked around on the floor (just in case).  When Tommy opened his eyes again- we STILL couldn't see it.  Now were were starting to sweat.  This was our first try- and we couldn't see it.  His dad THOUGHT he saw it up high, be we couldn't be sure.   (Remeber, these babies are $500 each!)  We decided to call the ophthalmologist office for advice.  We were thinking that we'd probably have to go to the office the next day and have them remove it or look at it or something.  When I finally got to talk to the nurse, I hear "There, I see it, it is on his eye now!".  What a relief!  Even though I had to stammer through something to discuss with the nurse (I just asked what we should do in the future if it gets stuck high in the eye), I felt MUCH better that it was in.

There is a great video posted on YouTube from a mom who has two sons in contacts:  http://www.youtube.com/user/suebhoney2672
She is incredible- we've watched this a few times.  Maybe I can convince my husband to make his own video since he is so good at it!  I thought about taking pictures this time, but I figured he would nix that idea.

The day after surgery

The appointment the day after surgery was pretty non-eventful.  There was a lot of waiting (our appointment was at 8:30am and we didn't leave until 12:30pm!) and very little talking.  We saw the ophthalmologist, the ophthalmology resident, an optician, and a nurse.   The ophthalmologist looked at his eyes (after they dilated them, of course!) and said that the surgery aspect looked good and there was still too much swelling to tell how much the PHPV would affect Tommy's eye.  Ugh, more waiting.

The optician and the nurse came and fitted Tommy for his contact.  The ophthalmologist came back and decided on the strength.  Then came the hard part:  trying the contacts on!
We had a very nice nurse- he was funny, nice, and professional all in one.   He brought a fitting contact and popped it into Tommy's eye like it was nothing.  Tommy barely blinked.  Then he taught us.  When I say "us", I do mean that he taught Tommy's dad.  Since Tommy's dad wears contacts, he was elected to be the contact guy.  Interestingly enough, the nurse told us that in his experience, it is often the father's who put in and take out the contacts.  I watched, and I will probably have to learn... but will do that in the safety of my own home!  He then showed us how to "pop the contact out".  When he did it, it looked easy- again, Tommy was unfazed.  Now it was dad's turn to try to put the contact in while the nurse was there to help.  He was nervous, but when he tried to put the contact in, it was as if he had been doing this forever!  I was quite impressed.  Getting it out was a different story.  The nurse told us to "pull the eyelids open, push down, and the contact will pop out!"  Sounds easy, right?  It isn't.  Tommy cried and dad felt bad, so we let the nurse take it out.  After all, the poor guy had been through enough eye trauma with the surgery the day before!  While I am describing what it was like, I realize that I was too chicken to do it.  I am completely impressed at his willingness and ability to do this, and I do dread the day that I have to do it alone.

One of the scarier parts?  The nurse told us that the contacts cost $500 each.  FIVE HUNDRED DOLLARS!  And that some kids lost one contact a week.  YIKES!  I had half-heartedly tried to find out what our insurance covered before this visit- but now I am on a mission!

Post-Op: More bad news

After about an hour and a half we were ushered into a consult room.  Admittedly this made me a little nervous.   They didn't make anyone else go into a room... what could it be?  Luckily, we didn't have very long to dwell on the "what ifs" because our ophthalmologist came in fairly quickly.  He sat us down and told us that the cataract surgery went well and the cataract was removed.  Unfortunately, he also told us that Tommy has PHPV (Persistent Hyperplastic Primary Vitreous).  He explained that this was a lack of development in the back of the eye and he didn't know how much of the back of the eye was involved yet.  He said that there was a wide range of severity with this condition, but couldn't tell Tommy's prognosis yet.  This was disheartening, but our baby was out of surgery!  We had to wait a little bit longer before we were brought back to the recover area.

In the recovery area our little Tommy was wrapped up in a big warm blanket and was being cuddled by one of the nurses.  He looked so little!  He had the protective patch over his eye, which would stay on until the next morning.  This nurse mentioned that he might be a little sleepy as they had just given him morphine since he was screaming (my guess is that the poor little guy was hungry!)  We finally got to hold him- and waited for him to wake up a bit so I could feed him.  We noticed that his eye patch was coming off a little bit.  We called his nurse over (which was not the same one who was cuddling him) who basically blew us off.  Tommy ate- and I handed him over to his dad.  At this point, the patch was over his eye, but was gaping at one side so you could SEE his eye- while this was probably OK, we didn't want to have to deal with it falling off at night and us freaking out not knowing what to do.  So, we asked the nurse again- and she very reluctantly put more tape on.  But, she put it in such a strange spot, it really wasn't worth it.  We decided just to secure it at home.  We wanted to get out of there and go home!

Tommy slept all day long once we got home.  The family we had in town helped us cuddle him all day.  We kept him comfortable and he only needed a dose or two of acetaminophen.  Unfortunately, this meant he was awake ALL night long!  It is amazing how resilient children are, he really had very little residual issues related to surgery.  The next day (aside from a visit to the ophthalmologist), you never would have known he had been in surgery!