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!

Perspective

We were in a general pediatric surgery area for Tommy's surgery.  Within minutes of checking in,  we were humbled by what surrounded us.  We have been stressing and worrying about Tommy and his surgery and diagnosis for weeks.  We'd gone through the "poor baby" thing with a million people.  There were a lot of people thinking about him and praying for his surgery to go well.  Looking around, we realized how incredibly lucky we were to be worrying about this- which is a relatively small issue compared to what some people go through.  While we don't know the stories of anyone there- we know at least two of them had cardiac issues.  There was a family- there must have been a group of 10 people with shirts saying "Save Krystyn's Heart" or something like that.  While I don't know that they were currently there for major cardiac surgery- I do know that they've had a much tougher road than Tommy.  I also know that they weren't sent to the family waiting area, which likely meant that they were admitted to the hospital post-op. 

In any case, this experience has given us a whole new appreciation for what people can endure.  We realized that we have family members and close friends who had dealt (or are dealing with) medical issues with their children.  Some with much more significant surgeries than Tommy.  We can only hope that we were supportive enough, because as we learned, you really have no idea what it is like until you go through something yourself.

The waiting game

We had been told that our ophthalmologist was slow during surgery- that made us happy, we certainly didn't want him rushing.  So, we knew we had a long wait.    We were notified when Tommy was asleep and the surgery began and were told that they would update us every hour (if it lasted longer than an hour).  We were able to get a bite to eat and let our friends know that he was in surgery.  We watched as other surgeons came and talked to parents right in the waiting room.  Thankfully, there did not seem to be major drama for anyone around us.   Here is a link to what the surgery looks like (not Tommy's) - I haven't been able to watch it all the way through yet.  http://www.youtube.com/watch?v=phradRutgOU

After about an hour and a half we were ushered into a consult room.  Admitedly 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!

The day of surgery

The day was finally here- surgery day.  A day we both anticipated and dreaded. 

Tommy's surgery was scheduled on a Monday- which appears to be "surgery day" for our ophthalmologist.  Tommy couldn't eat for 4 hours prior to surgery- which I thought was going to be a DISASTER for this little baby would eat non-stop if he could.  Check-in was at 6:30am, so he ate last at 2:30am.  I got him ready and at about 4:30am he started crying- poor baby was hungry!  We left the house at 5am (it was only a 30 minute drive- well, less at that time of day- but we didn't want to be late).  Tommy fell asleep (thankfully) in the car and was an ANGEL the whole time.

We checked in at the appropriate place and waited for our names to be called..

He slept the entire time we waited.  We finally got called back to pre-op for more waiting.  A nurse came by to take his vitals (the chunky monkey was already 13 pounds!) and check him in.  They gave him a hospital bracelet- and still he slept on!  The anesthesia resident came by and asked his questions and gave his spiel.  I asked him what they would be using and made him tell me drug names (we never open with "hi, we are pharmacists!" because we don't want to be those annoying people but we do insist on knowing what our kids will be getting.)   I have to admit that he was a little scruffy and he made me nervous.  I know that appearances mean very little, but he had the 3-day scruff going on and it made him look a little less professional, I like my doctors to be clean-shaven!  (You should know that my husband thinks I am crazy for this thought!)  The ophthalmologist resident came by and she marked his eye with a marker to make sure they operated on the correct eye.  It was the strangest thing!  There was a magic marker all wrapped up in sterile wrapping- I understand why, it was just weird to see.  The attending anesthesiologist and another ophthalmologist resident came by- it seemed like a million people came and asked the same (or similar) questions... but we were at a teaching hospital, so it is common.  I know people get annoyed by this, but I found it reassuring that so many people were thinking about my baby!   At last it was time to take him- the attending anesthesiologist came and took him in her arms (which I am very grateful for, it was much less intimidating than wheeling him off in a big bed).  I still cried, but it could've been worse.  We were then lead back to the family waiting room.  At the reception area we received a pager that would go off if they needed to talk with us.

FYI:  In medical training, there are residents and fellows.  Residents are licensed professionals (in this case physicians) who are in post-graduate training.  This can be in general medicine or specialty areas (such as anesthesia or ophthalmology).  Fellows are also in post-graduate training, but are also post-residency.  They are specializing in an area and are undergoing more extensive clinical training as well as adding a research component to their training. 

Just a Cataract

Finally, the day of the eye doctor visit was here.  It was on a Tuesday at 2pm.  We had scrambled to make arrangements for our other children because we had been told that the appointment would last hours (bring a snack kind of visit!).  Amazingly, we had been able to put things out of our minds off and on (the sick-house probably helped!).  But, the day of the appointment was a different story.  I couldn't help but replay all of the possible "what if" situations and it was killing me.

We get to the appointment, check in, and wait.  Tommy was thankfully asleep and thus was very patient.  We watch other kids come in, and I tried to picture in my mind what they were in for.  Some had big metal patches, which I assumed was from an eye injury, some had big thick glasses, some had other development issues, and some had no obvious eye issues.  We were finally called in by a sweet resident and went to a dimly lit examination room.  She introduced herself, examined Tommy, put drops in his eyes to dilate them... and sent us back to the waiting room to let them dilate.  She gave no indication of what could be wrong... and we weren't brave enough to ask any questions we didn't want the answers to.  This is fairly amazing as we both like to be in-control and in-the-know of what is going on, so for both of us to be silent, you know we were scared.  So we waited again, watching kids come and go.  We discovered Angry Birds on my husband's smartphone (love it!) We waited some more.  (Did I say we waited?)  Finally, we were called back in to another room.  These rooms all looked the same, big eye equipement chair, desk for the doctor, a kids movie playing on a big-screen TV, and these little dogs mounted on what seems like a motor high up on the wall.  I am slightly fascinated by these little stuffed dogs because I have NO idea what they could be used for.  I recognize most of the equipment (I can't tell you what much of it does, but I know it belongs in the eye doctor's office!), they still use that stupid little booklet to test depth perception.  But those dogs?  No idea.
We waited and waited and waited.  Tommy was incredibly good during the whole visit- he barely fussed (only when he was hungry) and tolerated all the poking and prodding just fine.  Finally the "attending" ophthalmologist came in, introduced himself, and examined Tommy.  He was silent during his examination.  I couldn't decide if I should be paranoid or relieved at his silence.  (Remember, I'm still fairly newly post-partum and on pain killers, and we are both fairly sleep-deprived and stressed out.)  He examines, writes a little note on Tommy's chart, puts on some funny piece of equipment on his head, making him look a little silly, then he examines and notes some more.  FINALLY he was done and says "Well, he has a cataract" and then discusses treatment with us.  He was so matter of fact and made it seem so simple and easy to say.  Like he had no idea that this had been ripping us apart for so many days!  Don't get me wrong, this man is great and brilliant and I have absolutely no complaints, it was just so... so anti-climactic after the build-up we had created for ourselves.

His treatment plan included surgery at 5-8 weeks old to remove the cataract by removing the lens.  He would then fit a baby contact that we would have to put in and take out every week.  (Contacts, in a baby?!)  Once we got the contact fitted, we would patch the good eye to train the bad eye to see.  He explained that babies need to learn to see, so catching this early was likely a better prognosis.  (Thank-you to our stellar pediatrician!)  He would also need glasses (bifocals) and would need surgery again at age 9 or 10 years once his eye was fully grown.  (I guess it is an old-wives tale that you are born with eyes fully grown!)  The ophthalmologist did tell us that his contact was big enough that he could not fully see the back of the eye, which meant that he couldn't tell us long-term prognosis for sure until he "got in there" to see.  I asked him, since I needed to be sure "But, you are sure that this isn't retinoblastoma?"  I could ALMOST see him chuckle- but he did confirm that Tommy did NOT have retinoblastoma.  (Note: My husband remembers this slightly differently.  He remembers him saying that he couldn't see completely into the back of the eye due to the size of the cataract, but didn't think that retinoblastoma was the cause of the leukocoria.  I'd believe him if I were you, as I can't remember signing the consent for surgery but there my signature was on the day of the operation!  I'm happy to rember the relief that I felt.)  After that, nothing mattered.  This treatment plan seems horrible to write out (and admittedly isn't super-easy) but it was such a relief!  It wasn't cancer!  We were HAPPY for a cataract.  Never in my wildest dreams would I have predicted that I'd be happy for a baby of mine to go through surgery for "just a cataract."  But we were.  Perhaps those 4 agonizing days of waiting and wondering were all for the purpose of making us realize how incredibly fortunate we really are.  This could have been so many bad things but it was "just a cataract" and we were thrilled!

Our ophthalmologist has an interesting name- on that felt very familiar to me- but how or why I couldn't put my finger on.  About half-way through the visit it dawned on me- I know his daughter!  In fact, I had precepted his daughter when she was a pharmacy student.  Then came the dilemma, do I tell him that I know her?  What if I am wrong?  So, at the end of the visit (while he was writing his finally check-out stuff, I casually asked if his daughter was a pharmacist.  I was right- she was!  I told him how I knew her, and he lit up like any proud papa discussing his little girl!  It was nice to see his "softer side" and it can't hurt to have a personal connection to the guy cutting into your son's eyes, right?

We left with surgery scheduled for his 5 week old birthday.  We were instructed to contact a special supplemental insurance company to help pay for these contacts.  Silly us thought that this was unnecessary, we had good insurance and didn't think we'd need that!  Heck, my husband wears contacts and they are only a few hundred dollars a year!  But that story is for another day... after all, we had some calls to make.  Tommy had "just a cataract!" and we had to spread the great news.

Red Reflex

Our resolve NOT to look things up lasted approximately 5 minutes... it lasted until I could turn on the smart phone and start googling.
What is this red eye reflex?  This was a term that neither one of us had ever come across before.  We knew that the pediatrician always checked the kids' eyes during well-child checks, but we always thought it was to check that the pupils were round and equally reactive.  We have since learned that there are MANY reasons why they check the eye:  they check the pupils, the cornea's appearance, they check visual acuity, ability to fixate on objects, alignment, and they check for a red reflex or presence of leukocoria to name just a few.
The red reflex

The red reflex test or "Bruchner's test" can detect many different ophthalmologic problems in children and should be performed as part of a normal newborn screening.  In normal eyes, the practitioner will shine a light into the eye and will see a red reflection with the ophthalmoscope.  This is also what causes "red eye" in pictures.  From some stories we read on the internet, this is one of the ways their child's problems were diagnosed, parents would notice that the eyes didn't match in pictures.  This isn't something we noticed before our pediatrician visit... but looking back (hoping to find 2 shining red eyes) we saw what she saw:


His left eye show no red reflex



Add caption

So, Tommy had no red reflex (or rather, he had leukocoria, which means white pupil) in his left eye.  The pediatrician casually mentioned the word "cataract".  She did not mention the other horrible things it could be such as retinoblastoma, chorioretinal coloboma, persistent hyperplastic primary vitreous, endophthalmitis, Coats disease, retinal detachment, or other seemingly scary things.  We scared ourselves silly googling information (even though we knew better), then scared ourselves more by trying to dig into the scientific literature.  The literature was perhaps scarier because we read that the incidence of retinoblastoma was not comfortably (or significantly) different than a cataract in the literature we could find.

We spent 5 days torturing ourselves with all of the terrible possibilities.  Did he have cancer?  Would he lose his eye?  Would he be able to see?  We cried, we prayed, and debated about how many other people to torture with this information.  In the end we told a few close friends and just a few family members.  It got to the point where I just had to look at him and I would cry... so telling people about this just seemed worse, it was like reliving the terror.  We were sleep-deprived, had a house full of sick kids, and I was post-partum... looking back, I still am not sure how we survived that weekend!  This was the only positive thing about having a house full of sick kids- they provided a much-needed distraction from our own imaginations.