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.

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!

Patch Rash

Tommy has reached the point in his therapy where he has to patch four hours per day.  He has also reached that point in his development where he can successfully pull off his patch.  He hates being patched.  At baseline, his skin is sensitive and appears to itch all the time.  The patch just adds to that.  I'm fairly certain that he can't see very well out of the "bad eye" (but I'm trying to remain optimistic that he can see something!) and the patch irritates his skin.  I don't blame him for being crabby- but it is no fun for anyone!  I haven't found that magic thing to keep him occupied while patched.  I've heard that TV, video games, movies, and bribes may work when he is older.  At 4 months old, it is just simple persistence.  I'm thankful that we have a daycare provider who genuinely loves him and wants him to see as much as we do.  She helps out a TON by keeping him patched during the weekdays, I'm certain that most daycare centers wouldn't be so vigilant.

Nonetheless, Tommy went through 3 patches today.  I even tried a super-sticky, ugly band-aid type patch.  He pulled that off as well, and was left with "patch rash" that makes him look like he has a big red circle around his eye.  I've been putting hydrocortisone on it, but the poor baby is stuck looking like this for a few days!  I need to keep reminding myself that patching is good for him and it makes his eye stronger.

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.