Em's Eye Surgery

A little background eye info on Emerson and our strabismus journey:

Oct 2: Bring Emerson  (12 mos) to her first Optometrist appointment (Dr. Chen). Am told she has a "high" prescription, and to bring her back in 6 months to be most likely fitted for glasses. Or sooner if the eye crossing worsens.  My gut tells me this is an inaccurate diagnosis.  My suspicion is confirmed when they bill our eye insurance rather than medical insurance and am told that "strabismus" is no where in the Dr.'s notes.  I'm frustrated -- I didn't bring my baby in for a checkup! I brought her due to the eye crossing!

Oct 20: Consult another Optometrist (Dr. Weiss), who confirms that Emerson should be seen immediately for strabismus, and says "the only mistake you can make right now is by waiting 6 mos."  She calls Children's and sets up an appointment for us. She's the most amazing Dr! (And a longtime close friend!). Too  bad her practice is in Florida!! =)

Oct 25: Meet Opthamologist at Children's Hospital (Dr. Leuder).  He says she needs glasses immediately to help correct the eye crossing.  He says at this time that if it is not corrected with the glasses, she will require surgery.

October 31: Em starts wearing her first pair of eyeglasses.  Solid purple indestructible (we hope!) frames with a 3.75 prescription in each eye. With each passing day, she seems to be crossing less and less, although still occuring.

December 26: Return to Children's to evaluate how the glasses are helping. Am told that before glasses she had "40% cross, and now 20%ish cross" and will still need surgery for complete correction.  Em was totally uncooperative at this appointment, and we never saw the actual doctor. I don't think the assistant who was charged with doing her "measurements" got accurate responses, because she hardly looked at him in the 5 minutes he spent with her. He refers me to a nurse to schedule surgery for January 4. (Which I later cancel because I have such a bad feeling about this). When I call to cancel and cite the reason is that I think she might continue to get better with the glasses, a very rude nurse tells me "well, we don't know what the future holds, do we!?"

January 10: Meet Opthamologist (Dr. Blatt) at St. Louis Eye Center. He confirms that Dr. Leuder's diagnosis is accurate, and Em will need surgery.  He recommends patching her right eye for 1 hour/day so she doesn't lose vision in the left eye while waiting for surgery. This is called amblyopia. The brain pays attention to the image of the straight eye and ignores the image of the crossed eye, resulting in vision loss. Strabismic amblyopia occurs in approximately half of the children who have strabismus. We schedule surgery for Jan 30.

January 18: Consult Optometrist  (via telephone) who specializes in therapy for bionocular vision. Told they can most likely help Emerson, although it will be time consuming, costly, and not covered by insurance, as there is currently no scientific data backing up the face that vision therapy actually works. After an internet search, I find therapy vs surgery is a very "hotly" debated topic among vision docs. I have some hope, as Harvard is currently putting money into this therapy at one of their teaching hospitals due to the positive anecdotal evidence it works. I call our insurance company and ask for an exception for this treatment to be covered. I'm told we will find out in 5 business days.

January 25: No word from the insurance company. I call them and am beyond annoyed to learn that they needed another piece of information to process the paperwork, yet apparently didn't attempt very hard to contact me and let me know this piece of information. A customer service rep promises to call me next week and let me know of a decision. (Update: I never got this call back.)

I call Dr. Blatt's office and tell the nurse I think I am going to cancel the surgery for next week, as Em seems to be responding favorably to the patching.  She tells me I need to bring her in for the Dr to evaluate and make sure she isn't experiencing amblyopia. We keep our appointment already scheduled for Monday.

January 28: We meet with Dr. Blatt for Emerson's pre-operation appointment. I  communicate to him I am considering canceling the surgery, as I feel like with the patching I am seeing much improvement.  I ask if this progress will continue, particularly if we incorporate more eye therapy. He assures me she will still eventually need the surgery, therapy alone won't work in her case, and I am putting off the inevitable. Also, the younger a patient is when surgery is done, the better chance her brain has of learning appropriate depth perception. I agree to proceed with her scheduled surgery. I can't wait for this agonizing experience to be behind us.

Jan 30: The surgery takes approximately two hours.  Other than waking up so crazy early (Thanks to my mom for getting the "big" kids off to school!), the hard part of the morning is keeping Em happy without giving her food. It breaks my heart that she is so upset saying "More! More!" to me yet I am not allowed to give her anything to eat or drink. She is mad when the anesthesiologist takes her away because she knows I understand what she wants, and she is crazy frustrated I won't feed her. Little doll walks over to a sink and shows me what she wants even! My momma gut still isn't sure we should go through with this yet.

After the approximately 2 hour surgery, the Dr. comes out to tell us he is finished and he feels it was a success. (The realist in me knows he can't possibly know this information at this time, afterall, I might have very well earned an honorary degree with all the reading I've been doing on this topic on Google, and wonder what defines success!?!  That he didn't damage my baby's eyeball while he was hacking on the muscles attached to it? Humm.)  I like Dr. Blatt. Don't get me wrong. And I realize he is trying to help her. It's so hard to see your baby so swollen like this (lucky it's  not a clearer picture!!) and know that someone did this to them!  On purpose! When your momma gut was saying "wait! maybe she will keep getting better the longer she is in glasses and therapy!"
And have you ever held a baby as she came out of anesthesia?  Your protective claws would come out too!! So. Not. Nice.  I internally scold  myself for ever agreeing to this.  Why didn't I press the therapy longer!!?
Jeff and I try to catch glimpses into her eyes, but she is so swollen it is painful to look at her.  Her eyes look so bloody, bloodshot, swollen, literally tears of blood that it physically makes me cringe and think I might vomit. Instead, I hold back tears and try to love on her and keep her calm without actually looking into her eyes. We were warned the whites of her eyes could be bloodshot for up to a month post surgery, but somehow, I feel completely unprepared for this.

After her time in recovery, we get to bring Em home. Jeff gives her a pint of blueberries and she finishes off the entire thing and says "More! More!" We give her a little bowl of goldfish crackers, and she does the same routine.  She has some food trust issues with us at this point. The anesthesia is still wearing off, and she can hardly stay awake. She takes a few handfuls of food, and falls into what seems to be a deep sleep. If I put the food to the side, she wakes up minutes later saying, "More! More!!"  We enjoy the unusual cuddle time and catch up on some HGTV. Her facial swelling seems like it is going down. She still only opens one eye at this point, and keeps the other loosely shut.

Because in an awful twist of fate, our town has experienced an unusual water main break, we have zero running water coming out of the faucet for most of the day. I bring Em to my parents house to give her a bath in clean water and clean the "hospital" off of her.

Fortunately, we regain water before things get too nasty. (Think, no flushing toilets!!). For this, we are soo thankful. We are lucky, many people in the community are still without. The hassle of boiling doesn't even seem bad. I'm just thankful for the dirty water we have! 

January 31 morning: Em had a pretty decent night of sleep. (Thank you, God!!) This morning, I continue to try and get glimpses into  her eyes to see the alignment of her eyeballs. It is easier, because she isn't so swollen, but she still is fairly "squinty" and when I am able to see in, the redness in the whites of her eyes is jarring.
After being awake for just an hour or so, I put her down for a nap. She seems so cranky, and I wonder if she is getting a headache from her "new vision" while her brain attempts to adjust. She sleeps 2.5 hours. I try to put her down again in the afternoon when she seems sleepy again, but go in when I watch her attempt to throw her leg over the edge of the crib. She normally wouldn't jump out, but I don't trust her today!  She's off balance and walks a little bit like she's been drinking. She walked straight into a drawer this morning that was open, and smacked her forehead pretty decent.

January 31 evening: Em is opening her eyes even more, and overall looking much better.  However, I've gone into nearly full panic mode feeling like her eyes aren't lined up straightly. See this picture above?  The eye on the left appears to be looking off to the side, while the eye on the right is looking straight ahead.  PRAYING this is "normal" part of recovery.

Tonight, I held up a water bottle. She reached for it, but totally missed. She went waayy too far to the right of the actual bottle. She looked surprised, and I was crushed for her. It's hard to watch your kid seem to "regress".

We meet with the Dr tomorrow for our followup appointment.  I NEED him to tell me that this is totally typical recovery.  Because I am going INSANE. And I don't think I can make her go through this all over again to correct that eye.  But oh, it's ECKH looking!  I'm heartbroken for Em.

Please PRAY that this is normal, and she will recover with perfect binocular vision and excellent depth perception!