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.

Another Chapter- and a question for all iMoms

Tommy is now 3- and has his own thoughts, feelings, ideas, personality...  as a mom, that's both awesome and sad all at the same time.  I love seeing him become a real person- I love watching all the kids develop, but with each new turn, it's one step towards peeling away from me.

Tommy has  a more willful personality than his sisters- sometimes I think it's because he is a boy, or because he is spoiled, or because he's the 4th, or maybe even because he's got this little "eye thing".  I'll probably never know.  What I know is that he has been the kid who has wanted to dress himself earlier, pick out his own clothes earlier, and has definite opinions on everything Tommy.  It's been a blast.

This new little person has feelings, too.  I've described how he is ready and willing to tell people about why he wears a patch- in fact, I have prematurely patted myself on the back quite a few times for how "maturely" he handles questions.  His daycare provider told me the other day that another little boy asked Tommy why he wore a patch, and Tommy simply explained it.  (Ah, proud mom, we're doing good!)  We are out and about and someone calls him a pirate and I refrain from punching them.  (Yay!  Good job mom, show Tommy that none of this matters!)

But- this celebrating may all have been premature.  I admit that I dread the day he leaves the cocoon of our home daycare.  It's small, great provider, great families.  I do see kids stare and ask questions of their parents.  I do know that kids are honest cruel, sometimes unintentionally.  I do remember what it feels like to be picked on for being different.  I dread that Tommy will have to face all of that and there will be nothing I can do.

I just never expected Tommy to care so soon.  We were in our small(ish) town at the local bakery.  We walk in and a little girl shouts "Hey, you look like a PIRATE!"  This isn't the first time, won't be the last.  I look at Tommy and say "Say Arrrgh, Tommy!"  He hides.  This kid who can talk anyone's ear off, hides between my legs.  The girl didn't stop.  Her parents even joined in to say "Is he wearing a costume, how silly!"  (They said this to the little girl, I presume they knew that a polo shirt and a patch do not equal pirate costume)  Another lady in the shop seemingly tried to cover up and talk about her son's eye issue and how her little boy would have loved a patch.  But the family didn't stop- more pirate talk.  I honestly didn't know what to do.  I usually encourage Tommy to laugh it off or play along, but he was clearly... different about it this time.  I stayed silent myself- I found myself wanting to tell them he wears a patch for a reason- to make his eye stronger.  I wanted to defend him, I wanted to get my donuts and get out.  When we left, the girl shouts "Bye pirate!"

We get out the door and Tommy says "I NOT a pirate!"

Heart sinks.  Heart breaks just a little.

I ask if the little girl made him feel say.  He nods.  Heart shatters.

We talked about ways he could control the situation.  (Sounds big- but really I just told him that if someone says something like that to him, he could just say "I'm not a pirate, I'm TOMMY!")  We practiced this for a few minutes and he cheered up.  I showed him the #camopatchkids on instagram- to show him that there are lots of kids like him who wear patches and glasses.  Austin's pic made his day.  (I love social media!)

But fellow iMom readers- what have you done?  What have you seen?  How have you handled the moments when kids realize that other kids think they are different?

How can I make this cute little face never be sad about that again?

Study Patient

I enrolled Tommy in an ophthalmology study a few weeks ago when he first developed high ocular pressures.  Tommy is exceptionally patient with eye exams and all other matters of poking and prodding.  (I think this is related to the fact that he is kid #4 and has endured countless hours of poking and prodding from his 3 older sisters)  Our doctor said the study was low on kids under 3 years old, since most are not super-compliant with eye exams, so he'd really like Tommy to be a part of the study.

New glaucoma suspect- pressure of 23

This particular study is designed to compare 2 different eye drops in children.  Neither of them carries an FDA approval for use in children, however, due to extensive experience with one (timolol), over time, it has become standard therapy for pediatric glaucoma.  This is sponsored by another company hoping to gain FDA approval in pediatric patients for their drug.  (I'm intentionally not mentioning the other drug)  Most studies offer their subjects some type of compensation for study visits, usually a nominal amount of money for gas or a gift card.  This study has a generous compensation, however, the real reason we decided to enroll Tommy is that we get to keep a really close eye on his pressures.  There are 4 study visits (baseline, 2 weeks,  6 weeks, and  12 weeks).  At each study visit there is a complete eye exam (with pressure checks and measurements), blood pressure, and heart rate measurements.  At baseline and 12 week visits there is also an EKG measurement.  The EKG, blood pressure, and heart rate checks are likely due to the effects that timolol can have on the heart if it gets systemically absorbed.  Each study subject is randomized to get timolol or this other drug.  Since I know that both drugs are proven to work in glaucoma (even if it is in adult patients), I felt comfortable.  I would not have joined a placebo controlled study, I was paranoid enough about this new diagnosis!  We had to instill drops into his eye twice daily- at set times 12 hours apart.  That part is more challenging that I thought!

Eye drop technique is important in these drops, a significant amount can be absorbed if it isn't administered correctly.  I was surprised that the study coordinator did not go over this with us extensively.  In fact, we had no instruction at all!  Tommy's dad and I are both pharmacists, so we know the proper way.  You need to create a pocket with the lower lid, put a drop in, then put pressure on the corner of the eye where it meets the nose for ~30 seconds to 1 minute to minimize absorption.  We had this down, but I do wish this was more widely circulated.  (I'm thinking about creating a video for another post)

Pressure is 34- yuck!

 

I love knowing the eye pressures so frequently.  I'm happy to report that Tommy's pressure is down to 16 mmHg in the eye that has glaucoma.  Awesome news- since his baseline was ~17.  I watched it steadily decrease, and felt a small victory each time it was a little lower.  Since he received the diagnosis at a pressure of 23, and the baseline pressure was 32, I am thrilled.  The only thing I don't love is that our PO is a little more focused on completing all the study paperwork.  There are a lot more boxes to check, t's to cross, and i's to dot than our normal visits.  He spends a little more time staring at the computer than usual (side note, this is a problem happening in all of medicine that has nothing to do with study visits, but that is for another blog!)  We still love him, but  I will be a little glad to get back to a more Tommy-centric visit.  Tommy is a champ- but these visits take a little longer than usual, and he is a little antsy by the time it is all over.  His backpack full of tricks only lasts so long.

Pressure is 24!

Before we started the study, Tommy was put on timolol, 1 drop twice daily.  He was only on it for a few weeks, but it didn't appear to be working.  His initial "bad" pressure was 23, our PO's low threshold for treating.  At the baseline study visit, Tommy's pressure was 34 mmHg.  I was panicking- and when the PO didn't mention it, I was just a little more than stressed out.  When I asked him about it, he really and truly was not worried.  Apparently, the amount of cooperation from a child really matters in these pressure readings.  If you squint at all, the pressure increases.  Even good patients have difficulty with this.  By the second study visit, Tommy and I had a trick.  If I got him to focus on an object at the back of the room (our PO has movies playing) then he was so busy trying to spot what I spotted, he didn't squint, and the pressures were better.  By the 2nd visit, pressure was down to 24, and I don't know if this is study drug effect or good technique.  At the 3rd study visit, it was down to 16- and I don't really care if it is study drug or technique- it's better!!!

Happy day!  Eye pressure down to 16!

Yay for good pressure readings!  But now is the next dilemma- which study drug is he on?  He had started on timolol, but the pressures increased.  That leads me to believe that it could be the other drug.  I asked if the study would be un-blinded at the end (and since the company reached enrollment, the study is now closed).  The study coordinator is looking into it.  I'm thinking he is on "the other drug".  That drug is usually given only at night.  While we have a bottle for morning drops and a bottle for evening drops, Tommy only complains about the evening drops "it hurts".  (Those have to be some of the saddest words your child can say to you as you are doing your best to help him).  Hopefully they will un-blind it so we can continue on this drug that is working!

What is it really like though?  I wish I could ask Tommy.  He really doesn't seem to mind the visits- he gets a lot of attention from the assistants and the study coordinator.  The love him, and he loves to show off for them.  Last time he drew them all pictures, which made them melt.  I'm as proud as I can be- he tolerates all of this so much better than I could ever hope for.  Every morning and every night I poke in his eye to get the contact in or out, put drops in, patch him... and all he ever really says is "it's uncomforbull" or "it's gonna hurt!", occasionally, "no, mommy, no"  But no tears, no screaming.  Little trouper.  While I do realize that a lot of kids are going through a lot more, it is still never easy to see your baby go through any discomfort.

The following are just some random cute pics!

Ring bearer Tommy! (or as he said, "I not ring bear, I ring BOY"

Partied out.


 

Tommy selfie

Catracks, Concacks, and Eye Drops

Tommy is almost 3 now.  He talks non-stop.  Since he is the youngest of 4, he talks LOUDLY non-stop.  He has become incredibly attentive to things I say.  I first started noticing this when he started, ahem, shouting at the cars to "go fatter" and "get outta da way" and "learn to drive dot!"  I have NO idea where he hear any of that.  I'm blaming his dad.

He has also heard me explain his story a few times lately.  Apparently we've been getting out a bit more and seeing new people, since I've had more "What's up with his eye?" lately.  Or "What's up with the patch?"  I still have a hard time not answering some smart aleck response like "oh, it's just a sticker" or "What?!  What is wrong with his eye?"  But I don't.  Lately, Tommy has been starting the conversation with older people.  It goes something like this!

Older person:  "Hello there little man, how are you?"
Tommy:  "I wear glasses!  I have a catrack when I was borned.  I wear a concack and glasses and patch.  I have 3 sitsters.  I have a dog named Riley.  He peed on the floor.  This is my mommmmmeeee."  (I could go on, he does- but I will spare you)
Older person:  "What?!"

Older people have forgotten toddler speak, so I need to repeat it.  It makes me laugh every time.

Cataracts suck!

Eye update.  We had finally made it to 6 months between eye appointment visits.  I was woefully naive in thinking that we were in the clear.  Smooth sailing from here on out... you know, regular visits just to see if he needed new prescriptions, decrease patching,  easy peasy lemon squeezy.  Wishful thinking, I know.  I just was on this high of no news for so long.  Reality check.  Tommy was born with PHPV.  In general, this just sucks.  The vision screen was a joke.  Tommy was pleasant, but thought it hilarious that he called every picture a car (the old fashioned phone- a CAR!, the house- a CAR! all while grinning at the technician).  She had the gall to call his vision 20/300.  Really?  He wasn't even looking at the screen people!  Not to mention the fact that the pictures are pixelated pictures of things like a car, a house, a duck, an old fashioned car, and a dial telephone.  I'm not entirely sure my 6 year old could recognize these things!  But- we all know the vision screening at this age is just a stalling technique while we wait for the doctor.

I just love this shark hat.

We go to a teaching institution, so we see an ophthalmology resident first.  She does lots of things to Tommy's eye.  This wasn't to be a dilation visit, so it was going pretty quick.  She tests his pressures with a tonometer pen- "23" she says, "great!"  Umm, no, not great. So I say "Really?  That is higher than his usual- he runs about 17."  She says, "oh, we've been having trouble with that tonometer all day, let me get another one."  Second test, "23".  She says, "oh, it's higher, but not crazy high."  I swallow the scream in my throat..."yes, but it is higher, that is concerning." (Mind you, I'm not upset with her, just screaming in my head that this couldn't be true!)  So, she gets another tonometer- same result.  She then gets another tonometer- this one needs eye numbing drops.  Same result.  23.  It's official, the pressure is high.  Now she is more concerned and dilates his eye, and sends us back to the waiting room to let the drops work.  Can I just brag that Tommy was a rock star through all this?

Can we go home?

4 different teonometers, 4 different pressure checks, 2 different eye drops, contacts in, contacts out, 3 different people poking and prodding... and not one tear out of the little man.  Towards the end he kept asking to leave, but overall, much better behaved than me!  We also learned that his eye is drifting more than before, but we will still "keep an eye on it".  Those have to be some of the most frustrating words strung together that make little sense for his obsessive iMom.  I keep an eye on his eye EVERY DAY.  I obsess EVERY DAY.  To say it is getting worse and that we are just going to watch it is KILLING ME.  I guess I have something new to obsess over.

So- we begin a new adventure.  His diagnosis is "Glaucoma Suspect" (this is a real medical term!).  Which makes me chuckle- I picture some villain lurking around (think Scooby-Doo Villain).  We started drops last night so he doesn't become a "glaucoma convict".  Heehee.   We will be starting a study medicine in a few weeks- we agreed that he would join this study, mostly because it means frequent eye visits.  I can watch this pressure like a hawk!  (I looked, they don't sell home tonometers)

He is a trouper- I cried the first time I put the timolol drops in.  I want to kick and scream and yell about how unfair this all is.  He simply says "drops all done!"  I stress out about the side effects of the drops- he is happy that he gets his contacts out every night.  I'm mad at cataracts and PHPV- He happily tells people about his catracks and concacks.  Who knows, now he may even tell them about his eye drops.  I need to adopt his attitude towards all this.  I know it could be worse, I know, I know, I know.

My little superhero.