Oh the things I can do!

If any of you are finding this blog for the first time- I want to tell you that it gets better.  All the fears and worries that you are having right now... I promise- it gets better.

6 years ago (almost to the day!) I worried so much about all the things Tommy would NOT be able to do.

Here is a short list of the things he CAN do:

He can ride a bike (still on training wheels, but that has nothing to do with his eye!)

He can ski downhill!  (We are going on 3 years of skiing now!)

He can read!! (Ok, he's learning)

Even when patched!

He can explore in the woods:

He can do so many things.

The list of things he can't (right now) is short.  He doesn't love roller coasters (but is that his eye or his common sense?), he does take time to get used to new sets of stairs, and he still hates his patch.

This EYE that was so much of a part of my worry when he was little- has not held him back at all.

I'm a big kid now!

Tommy has grown and changed in so many ways over the years.  As I keep repeating, I am continually amazed at how little of a role "the eye" plays into our every day lives.  As he has gotten bigger, he has been more and more interested in taking care of his contacts by himself!  This past summer, when he was 5 years old, he started learning to take his contact out.  Here are some of his first tries at self care!

We have also started trying to have him put them in.... we aren't quite as successful there!  (Please excuse the crazy mama in the background!)

Strabismus Surgery in a 3 year old

It has been almost a year since Tommy had his eye surgery.  It was a much easier recovery than I expected and overall it went very well.  It just has taken me this long to re-visit it.  I tried to take a lot of pictures of each phase- just in case anyone wants to see the gruesome details.  It was much less scary than I anticipated.

The before:  Headed to the hospital at 6:30am.  Based on recommendations from the child-life specialist, we did not share a lot of details.  Tommy knew he was going to the doctor and knew they were going to fix his eye, but he didn't ask too many questions.  We thought it was best  to just not make a big deal out of it.  (We are very happy with this decision)

Check-in 7am- it was a busy morning, so my best laid plans of meeting with child-life was not happening.  But, we brought toys and just hung out.

They take us back around 7:45 am to do general vitals and get him ready.  This wasn't scary for Tommy, he's been to the ER a time or two.  He just liked having both mommy and daddy's attention!

My biggest fear was that this surgery would make patching and contact and drops and eye exams... much more difficult.  Tommy is extraordinarily tolerant and compliant with all of his eye stuff.  I was paranoid that this would change all that.  They assured us that they would give him medicine that would keep him comfortable- and make him forget.  This is Tommy right after midazolam.

He just got silly, a little slurred, and completely relaxed.

Note:  The black dot is standard procedure to mark the eye that is to undergo surgery

Medicine is in full effect- life is good for this boy

8:36 am:  And then things got real.  Totally zoned out.  Of note, we also asked for anti-nausea medication.  I had eye surgery as a kid, and can still remember the awful nausea.  I did not want that for him.  That added to the drowsiness.

This photo breaks my heart a little- totally out of it.  Necessary, but sad.

Next came the waiting.  It felt like 3 million hours, but it was closer to 1.5 hours.

9:45 am:  We get word that things went well and we can see him soon.  We can breathe again

10:00 am:  We get to hold our little boy.  Completely out of it, crying off and on, not seeming to be aware that we are there.  But feels oh so good to have him in our arms.

Eye is puffy and red, but he hasn't opened it yet

Bloody tears:  We were told to expect this, which I am glad.  It is a little strange to see (and a little scary)

Close up.  Single bloody tear.

Tommy had given up his pacifier by this time, but was very uncomfortable.  I  had one in my purse and we offered it to him for comfort.  He didn't really suck on it, but it did seem to calm him a bit.  The next 45 minutes or so were tough- he seemed very uncomfortable, but had not completely come out of anesthesia.  Cycles of moaning and discomfort and restless sleep.

The medicine worked- no vomiting.  The recovery room was full.  At one point they said he would be there for a little while, then what seemed like minutes later they were packing us up to go home.  Packed with washcloths (for the bloody tears) and crackers, we were on our way home!

Looks a little roughed up

11:59 am:  In the car- on our way home!  (I had thought we would be there until 3pm, so this was a nice change of events!)

12:37pm:  All smiles at home!

Ipad time!  Life is good.

The rest of the day was uneventful.  Tommy acted like any other day.  I was amazed.

Day 1 post-op:
6:31 am:  A little more puffy

The rest of the day was life as usual.  It was a little hard to keep him quiet, but all was well.
8am:  After getting up and moving, a little less puffy

10am:  Eye opens a little more- definitely bloody.

7pm:  More open, more visual proof of the surgery

Day 2 post-op:  What surgery?

crazy kid

8pm:  Each day it opens a little more.  The doctor had said "a day or two" to put the contact in.  There is no way I'm trying it today.

Day 4 post-op:  Eye open, very red, still not putting contact in- he's been through enough!

Day 6 post-op: Contact and patch!  Back to 100% normal!

Still red sclera, but he claims he can see and is not bothered by contact.

1 week later:  No one would be the wiser.

It took a few more days for the eye alignment to show- but here we are 10 months later, and he still has great alignment.  We've got new prescriptions in our glasses and contacts and a new drop to help control his pressure, but are very lucky!

10 months after surgery- what a grin!

Some Resources for Congenital Cataracts, infant contacts, glasses, and patching!

I've been getting requests for ways to "plug in" to other people going through the same thing.  I remember scouring the internet for any snippet of information I could find, so here is a compilation of things that helped me through!

Parent Blogs:  

In general, these tell about family life surrounding having a child with cataracts.  Many talk about day to day struggles with patching, contacts, glasses, and also about family fun!  These blogs help me survive the ups and downs of what we go through.

Here are the ones I follow regularly (forgive me if I missed any, I'm sure there are more!)

A boy. His brother. The mischief they find. http://thegloverfamilyblog.blogspot.com/

Epis, Patches, Inhalers... Oh My! http://3kids1wish.blogspot.com/

An Ounce of Luck and a Pound of Faith http://ounceofluck.blogspot.com/

Vision is a Gift http://visionisagift.blogspot.com/

See the Distance http://seethedistance.blogspot.com/

 Patches, camo and other random thoughts  http://patchesandcamo.blogspot.com/

There are many more beautifully written blogs out there by moms who have children going through similar issues.  I omitted a few who have either not blogged recently, or those who have changed the focus of their blog away from congential cataracts (etc) and more towards family life or interests.  You can find a few more in my profile and I do urge you to check them out!

Websites:

Little Four Eyes:  This covers issues with any kid in glasses. http://littlefoureyes.com/

  *They have a great post about other blogs:  http://littlefoureyes.com/2012/01/16/new-page-blogs-about-childrens-vision/

  *They also have a Facebook page:  https://www.facebook.com/groups/littlefoureyes/

Child Cataract Network (UK site) http://www.childhoodcataracts.org.uk/index.html

Bausch & Lomb:  I included this, because if you have Silsoft lenses, you will contact them at some point!  http://www.bausch.com/en/Our-Products/Contact-Lenses

Boston Children's Hospital:  Not where we go, but they have a GREAT video on how to put in contacts... I watched this a million times when we first started!  http://www.childrenshospital.org/az/Site666/mainpageS666P1.html

Simulation of vision:  Really cool site.  http://www.billauer.co.il/simulator.html

Facebook Pages:  

Closed groups: You need to request access, which is easily granted, but this makes it a little more private.

People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite! https://www.facebook.com/groups/58073768937/

Aphakic kids:  https://www.facebook.com/groups/139232330344/

Aphakia Group:  https://www.facebook.com/pages/Aphakia-group/121745891227537

Fun Sites (Mostly promotional):

Peeps Eyewear: https://www.facebook.com/peepseyewear?fref=ts

Eye Power Kids Wear:  https://www.facebook.com/eyepowerkidswear?hc_location=stream
  *They also have a non-facebook website:  http://eyepowerkidswear.com/

Little Four Eyes Marketplace https://www.facebook.com/groups/359677530776131/?fref=ts

Instagram:

Check out #Camopatch kids!  Many parents (and some siblings!) will post pictures of their kiddos in patches on Sunday.  Camo patch if you have any!

Patches:

See earlier post:  Fun Eye Patches

Support Groups:

 Yahoo Aphakic Support Group.  You'll need to request access, but this is a great resource.  You can post questions, answer questions, or simply read about what others are going through.

Little Tommy (just because I can't post without at least one picture!)

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!

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!

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.

And so it begins....

When Tommy was 4 days old, he had his first pediatrician visit.  We have been seeing this pediatrician for 8+ years and LOVE her.  We expected the normal new baby weigh in visit complete with lots of oohing and ahhing about how cute he is and amazement over how big he is.  We had also brought one of our older daughter's (who was home sick that day) and our doctor was concerned about her cold and was examining her!  Just as our pediatrician was walking out the door, she stopped and said "Wait, I have to check his eyes!"  She later told me that something just 'clicked in her brain' that she needed to do it again, as she thought she had already checked.  She had no reason to be concerned as the report from the hospital pediatricians was completely clear, perfectly healthy baby.  She looked in his eyes, then she casually asked "Did anyone say anyone at the hospital say anything about his eyes?".  Nope.  "Hmm, do you have a family history of congential cataracts?"  Again, No.  She then turned out the lights and examined again.  Now, we have known this doctor for a long time, we have a decent relationship and we could tell there was something wrong.  Without really panicking... she was a little rattled.  She told us that she could not see the red reflex in his eye.  The pediatrician left the room, promising to be right back.  His dad and I are both pharmacists who are relatively intelligent, I even work with kids, but this did not trigger any alarm in us, especially in our sleep-deprived state.  So, we waited.  She came back telling us that we needed to see an ophthalmologist very soon and she was working on getting us an appointment (not an easy feat at 4:30pm on a Friday afternoon.)  Ok, now we started to worry a little... but still no big alarms, after all, I had lazy eye as a kid and was doing just fine now.  When she came back with the appointment, we asked what would happen if it was a cataract, couldn't they just remove it and everything would be OK?  After all, older adults have cataract surgery all the time... right?  She was hesitant in her reply and evaded my question with a "Well, I don't really know, this isn't my specialty, that's why we have to get you to an ophthalmologist."  This is when I started to worry a LOT... this pediatrician was pretty smart, and I could tell she was trying NOT to go through all the worst-case scenarios with us.  So, we took her at her word and left.  Of course, in my sleep-deprived, hormonal state, I was weepy, but still was thinking it couldn't be THAT bad. 
When we got to the car, we agreed to not obsess about this and to not look things up on the internet.  You see, we can be our own worst-nightmares.  First, much of the information on ANY medical condition on the internet is crap and some of it is just plain dumb.  Second, we know just enough as pharmacists to understand some of the information, but not enough to make complete sense of everything (especially relating to the eye!)  How long do you think our resolve lasted?