Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, September 13, 2013

Eye Surgery

I know a while back I had talked about switching eye doctors for Meagan.  Her old eye doctor was very nice, but I felt not a good fit for us.  After looking around and talking to a few other people, they recommended seeing Dr. G - who is also a pediatric ophthalmologist/surgeon.  Our initial appointment with him was already a huge step forward.

As you know, Meagan completely freaks out at any doctor's office - she knows all too well now what it "could" mean ... so I was prepared for her to scream through her appointment as she had for months with our old eye doctor.  When Dr. G came in, Meagan stuck out her lip, which is what she does before she freaks out.  He noticed though and instead of approaching her, kept his distance.  He talked to her for a bit and then went through his drawer until he held up a toy that she seemed interested in... at that time, he came a little closer, and she was actually ok.  He did the eye exam with fairly minimal fussing from Meagan - something we had not seen yet at the other office.  I knew we had made a good choice in switching.  While her old eye doctor was very nice, he never seemed "comfortable" with Meagan -- if you are a parent, you know kids can read us like a book even without us saying anything... our emotions and moods are easily picked up by their intuitive selves and if it's negative, it only gets worse.  I really think Meagan could tell he was not comfy with her and that's why she always screamed with him.  Dr. G, however, had an air of confidence yet caution about him, and likewise, I think Meagan could pick up on that.  Because of that, she had a great exam and we finally got clear answers about Meagan's vision.

Dr. G said yes, he would have also tried glasses and patching - but after thoroughly examining her vision he said her nerves and muscles actually look ok.  There was no "structural" reason her eyes were floating to the side and one of them vertically.  He said instead, he believes she is having a disconnect between her brain and eyes as far as messaging goes.  Dr. G said her brain was not processing her vision correctly.  He explained that even though the structures looked ok, for some reason, probably due to the pressure from her Hydro, the brain was not "turning on" her eyes at the same time.  He said although Meagan can "see" her brain was only registering one eye at a time - so when she would look at me, she was only actually seeing me with one eye...which meant the other one was "off".. hence the turning and moving upwards.  He said because of this, it may also be causing a lot of her head tilt we have been seeing lately (she has been tilting her head a lot to the right when looking at things).  He said since we had done the glasses and patching to try and "trick" the eyes into turning on in non-invasive ways, it was time for surgery.  I knew it was a probability, and after 8 months to a year of battling glasses and patches, I was on board with it.  

Almost a year with glasses and patching didn't fix the issue

Dr. G said what he would try to do is manipulate Meagan's eye muscles so that perhaps it would stimulate new brain signals to register both eyes at the same time so her vision would be clearer and so one eye wasn't always turned "off" ... He said her left eye would need a lot more work since it also had vertical movement so the surgery on that eye would be a little more involved.  

A good picture of Meagan's right eye issues

Surgery day was yesterday.  We checked in early and of course had the typical wait for being called back, vitals, prep and all the stuff that goes on before surgery.  We were blessed with VERY nice nurses who were very sweet with Meagan and basically left her alone when they could so she wouldn't be so upset.  Finally Dr. G came in, explained again what he was going to do and asked if I had any questions.  Within a few minutes after that, the OR nurse came to get Meagan - she let me walk her to the OR doors and then I handed her off.  

I decided to walk around the hospital for a bit to pass time.  I got a cup of coffee and then went to the gift shop to just look around. Yes, Meagan didn't "need" another stuffed animal, but, she has had a special treat after every surgery so I decided to look around for something small.  After about 40 minutes, I got a call from the OR nurse.  I assumed she was going to tell me Meagan was finished, but instead she was just calling to update me. She said Meagan had done well so far and they were still working. I thought it was sweet she called to let me know how Megs was doing.  

I found a little something for Meagan and headed back up to her room.  About 30 minutes later, Dr. G walked in.  He said he had just finished and she was doing great.  He said of course since it was a brain issue they were trying to "tweak" there is no guarantee if the surgery would work, but he was hopeful it was a success.  He said her eyes would be red for about 3 weeks but she could go back to her normal activities.  He did say to keep Tylenol or Motrin in her for the first 2-3 days as her pain level could be fairly intense during that time.  He said after about 3 months we will be able to tell at a follow up eye exam if her eyes were functioning together and go from there.  The hope is that is the case - that both eyes will be picked up so she is getting vision from both at the same time.  Worst case scenerio - she could go back to seeing with just one eye at a time and require follow up surgeries.  But, in the long run, it's no worse than before surgery as that's what her eyes were doing anyway.

Finally back in the room

Snuggles from Mama

I must admit, compared to Meagan's other surgeries, I did kind of blow off this surgery as not a "big deal."  I think so far I have been proven wrong.  Meagan has several friends who have had eye surgery, but for some reason she seems to really have taken it hard.  She literally slept the entire day yesterday and as of 2pm today is still asleep.  She is very gaggy and chokes if I even feed her 2-3 ounces of formula so I'm feeding her very spread out during the day an ounce at a time.  She did attempt to open her eyes last night once, but since then has not opened them again.  She is shielding her eyes from any sort of light, even dim light, and is hitting her head a lot.  I assume she is just very light sensitive and also probably has a massive headache.  I am also assuming alot of her nausea could be related - I know if I had my eyes worked on it would throw off my entire balance and probably make me feel sick too.  I'm keeping pain meds in her still as it's quite apparent if it lapses she is extremely uncomfortable. I went ahead and cancelled my students for today because it is obvious she needs Mommy today and just needs an afternoon to lay low.  This just goes to show me how unpredictable reactions to surgery may be.  Nothing bad at all, but, she is obviously extremely uncomfortable and will need a few days to get back to herself.

The redness and bleeding should subside within the next 3 weeks

For a little while this afternoon when I was laying next to her, she dropped her paci.  She put her hands out feeling around for it (since she won't open her eyes) and so I put her hand on it and she put it back in her mouth.  She grabbed her blanket close again and started to drift off to sleep again.  But before she dozed off she said "ug.... ug..." which is her word for "hug."  Of course I leaned right down and gave her the biggest hug ever as she fell asleep.  I'm hopeful in a few days, she will perk up a bit and I'm excited to see how the surgery potentially helps her eyes and her vision.  I'm most excited though for a quiet few months with my girl! This was the LAST procedure/hospital stay/bump in the road for a while now and I'm so glad it is over.  Meagan has a big birthday coming up - and it will be such a blessing to celebrate at home and know there is nothing pressing on the horizon except lots of love, lots of family time, and of course, lots of "ugs" :)

Meagan pre-surgery.
  Even though I'm excited what this may do to help her vision long term, I'm going to miss her crooked little eyes. They were just "her" for so long. 


  1. I have a daughter that is 20 months and has ventriculamegaly, or 'mild' hydro and she tilts her head, too! I am going to show this post to her doctor in two weeks when we go. Thank you SO much for sharing! I hope she recovers quickly!

    1. Laura - isn't information between parents great? It is how I have learned a lot and navigated a lot of Meagan's issues with more calm and knowledge. The head tilt could very well be to her adjusting to see better in her own way - Meagan's shunt was checked and that was fine, so that's what we were left with - that it was a result of her eyesight... so we will see... time will tell.. if her tilt corrects then we know.. if it doesn't then we at least know it's probably not eyes and possibly weakness or something else cropping up. Good luck at the appointment!

  2. Hope Meagan feels better soon and this is the last planned procedure for awhile. Ellie had the same surgery a year ago and it made a huge difference in the way she looked but she still only uses one eye at a time (she switches back and forth between the 2 but only one eye drifts outward). The dr said we will do the surgery again soon but wants to give her a medical break since she's had so much done lately.

    1. Good to know!! I have a "gut" feeling she will need a follow up surgery - but like you said, her eye surgeon is very flexible especially since she's had an eventful few months so he would be fine with giving her a break too. Glad to hear it helped Ellie!

  3. I look forward to the updates on your little sweetie...what a fighter! Glad you found a Dr you both are comfortable with. Lots of love and prayers being sent your way as always!! <3