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!

No bad news doesn't mean GOOD news

This blog has been neglected- I apologize.  In reality, Tommy's eye is just such a small part of any given day that I don't have anything to share.  I have plans to post his story about the surgery- but I'm still processing that (yes, it has been 6 months!)

Patch pics even made the Christmas card this year!

We change his contact every day so that the timolol drops don't destroy the contact lens any faster than normal.  (the preservative in the drops can damage the contact- those babies are too expensive to risk it!)  When I first started- weekly changes felt like a huge burden, now daily insertion/removal seems like nothing.  (There's hope for you new parents out there- I promise it gets a little easier!)

We patch 4-6 hours every day- we now use only 1 patch per day.  This seems like such a far cry from when he was about 1 year when we went through 10-12 patches... sometimes in one hour!  (More hope for you newbies!)

Tommy wears bifocals- he doesn't love his glasses, but he generally keeps them on.

One thing hasn't changed- I still wish people had more tact.  Our latest interaction came at our local library.  A little girl (the youngest of 9 children- she's probably ~2 years old) came up to Tommy and pointed at his patch and said "Get that off your face RIGHT NOW!"  It was probably cute, but it irritated me.  Made me sad for what Tommy has yet to face with his peers.  Still want to scream when someone points it our rudely.  (yes, I know she is little, but to Tommy, it's still sad!)

So- basically no news.

He loves the play structure at the ophthalmologist!

Today we saw his ophthalmologist.  I could complain about the doctor-in-training who didn't know much about Tommy's history (hello, please read the chart just a little- basic medical school principle!)  But, what hit me the hardest is that Tommy will have to have a corrective lens in his GOOD eye.  I've been counting on that GOOD eye to carry us through his life.  His good eye was supposed to be the one that will allow him to read easily, to see the chalk-board at school, to drive normally.  All this work on his "BAD eye" was just supposed to be for "back up".  However, he is only seeing 20/25 in the good eye, and it should be better.  Much of me wants to protest- to say that he just didn't recognize those stupid pictures, he's shy, you didn't ask him enough, he's playing.... but deep down I know it's needed.  I also know that this isn't a death sentence for the eye- a small corrective lens in glasses he already wears will not change our life.  I know that lots of kids (with out cataracts) need corrective lenses and can still read, see the chalk-board, drive...  I just don't want it.

Dilated eyes- eye appointment craziness!

 What I know most deeply, however, is that for Tommy- he will take his cues from me.  I cannot show him disappointment.  I cannot show him that glasses or contacts or patching is anything but us working to make his eye as strong as we can.  None of this is about ME.  Tommy is the only one who deserves any kind of pity party- and so far, he is one of the strongest, happiest kids I know.  While he complains about wearing the patch or that he doesn't want a contact- his complaints never last more than a few seconds.  For this, I am eternally grateful.

Another Eye Surgery

We had a PO appointment.  Clearly we haven't seen health care practitioners enough in the last month or so... head wound (very minor), asthma exacerbation (ER), fever for 4 days (MD appointment)... we are on about an every 2 week visit to someone!

This visit was scheduled.  This visit, I expected that they would tell me that the timolol eye drops weren't working, Tommy's pressures were high, and they wanted to change him back to the study drug he had been on, travaprost.  I was wrong.  (I hate being wrong)  I was ecstatic that they told me his pressure in his bad eye was 18.  Yay!  Timolol is working! 

The appointment didn't start out well.  Tommy wasn't cooperating with the eye tests... or so I thought.  He wouldn't tell the new resident what the pictures were.  I thought he was being a pipsqueak- he couldn't even see the pics at 20/200.  Then she asked him to take his patch off... and he could name every picture down to 20/20.  Good news?  His vision in his right eye is 20/20.  Bad news?  His eyesight is changing- getting more nearsighted.  He needs new glasses.  Again.

That wasn't the real bad news.  At this visit they told us that it was time to do the muscle surgery to correct his esotropia.  This shouldn't have been a surprise- I knew his eye turned in (and a little up).  I know the doc's been keeping an eye on it.  I knew it was coming.  It still hit me hard.  Tommy is still so little- but big enough now that he gets it.  He won't understand WHY he will feel like crap or puke his guts out or WHY his eye is red and will have red tears and probably hurts.  But he can tell me.  He'll know that I drove him to the hospital and gave him to the nurse.  Don't get me wrong.  I know he needs this, I know it is in his best interest, and I don't have second thoughts.  I firmly believe in doing everything we can to save his sight.  I just wish he didn't have to go through it.

I had these surgeries when I was little (just regular strabismus type stuff- no cataract).  I had multiple (I think my mom says I had 7 between the 2 eyes).  I had them back in the day when it wasn't out patient, back before they had good anti-nausea medications.  I remember some of them I remember feeling sick and throwing up over and over.  I remember not being able to swim for weeks- and it was ALWAYS in summer.  (I was older when I had the last ones done- my last was at 9 or 10 years old)  I know things have changed.  The medical community has focused a lot on preventing nausea and vomiting for this type of surgery.  It's now outpatient.  I know it is a standard procedure.  But I want to know more.  I want to know when he will feel normal.  I want to know how I should tell him and when.  I want to know how to make his 3 older sisters not freak out when they see him with bloody tears for the first time.  I want to know exactly how many surgeries it will take. 

These questions can't really be answered.  I'll do my best to focus the next post on what it is really like- and I will post pictures so you all know what to expect if you ever go through it.