November 20, 2013

The World is Flat

WARNING: This is a VERY long and wordy post, I don't expect anyone to read it...mostly it was therapeutic for me to get this all down.
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I've been delaying this post for months, I'm not quite sure why because I definitely want this blog to feature the good, the bad, and even the ugly moments from our lives.  I guess I've just been waiting for there to be a spectacular ending to this particular story.  Well I've recently come to except that the ending I was hoping for isn't looking very likely.  So here it goes:

As mentioned HERE, we've been patching Macie for sometime now.  Each visit with the ophthalmologist seemed extremely positive, she seemed to be making leaps and bounds, at least to my (very limited) understanding.  We were warned about the possibility of surgery, yet when the doctor informed me of its inevitability I was quite shocked.

I was so confused and to be honest, I still have a difficult time understanding what exactly is going on with her vision.  The doctor explained to me that she has three issues:
1.  Poor vision - corrected by glasses.
2.  The eye muscle - we hoped patching would strengthen this. 
3.  The nerve - her brain is not making the connection to use BOTH eyes simultaneously.  

Though her vision has drastically improved in her weak eye, as soon as the patch comes off, her brain shuts that eye back down.  I was informed that if we do not correct the alignment in her weaker eye, the brain will eventually stop using that eye completely...the older she gets, the harder it is to fix and would be impossible to fix after age 10.  The procedure?  Basically they cut into each side of her eye (as in the actual eyeball) and from there they tighten/loosen the muscles on each side, forcing the eye to align.  The hope being that once the muscles are supported and the eye aligned, the nerve would start making the connection.  

So surgery it was.
Unfortunately this particular surgery is only 80% successful...and that's not all. There is a 30% chance it will un-correct itself (if successful) in 1 to 5 years and a 2nd or 3rd surgery would be necessary.  Oh, and surprise - if you stop patching, there is a 50% chance the eye will revert back.  Did I mention the doctor himself said it is EXTREMELY painful.  Needless to say my heart was broken and I cried all the way home.  Poor sweet Macie was clueless, but as the time for surgery dawned she must have sensed our anxiety.  She began to cry before doctor appointments and started asking why the boys didn't have to wear glasses or patches or have surgery...again, my heart broke. 

I was unsure of how much to tell her about the upcoming event.  We explained to her as simply as possible that the doctor was going to help her see better, she would go to sleep and when she woke up she might feel weird or hurt a little, but we would have medicine to help her feel better.  The boys were so sweet with her and said they hoped she could see over the mountains after her surgery.  

Our anxiety increased as the day approached, especially when Macie developed a fever/cold days before.  She received a blessing the Sunday before and the ENTIRE McCoy family fasted on her behalf.  Though I was a complete wreck the day before surgery (pregnancy hormones definitely didn't help the situation) John and I both truly felt a spirit of calmness as the morning came.  Macie was definitely nervous, but surprisingly calm as well.
The staff at Primary Children's were awesome and poor Macie had so much fun beforehand she had no idea what was coming.  They tested her lungs to make sure they were clear enough after her recent cold and everything was a go.  She made her very own doll and chose to drive herself to the operating room in style...
Saying goodbye to your child before surgery is definitely not easy, this was our third time and I assure you, it does not get easier with practice.  Having said that, after she left I once again felt an overwhelming peace and knew that everything would be okay.  After an hour or so, the surgeon soon informed us that everything went extremely well and we would see Macie soon.  He warned us that her eye would be filled with blood and she would be very uncomfortable.  That was the understatement of the century...Macie was screaming and thrashing and yelling like I've ever seen before or since.  They would only allow one parent to be with her and John felt I should be the one.  When I first saw her, there were three nurses holding her down as she screamed and grunted, trying with all her might to escape.  I quickly grabbed her and held her against me and continued to do so for the longest 20 minutes of my life.  

Macie was terrified, confused, and clearly in a massive amount of pain.  There were stitches on her eyeball and she was constantly trying to claw at her eye.  She pulled on the i.v, causing it to begin bleeding like crazy.  I have no idea how many times she hit me, I was drenched in sweat and certain I was going to go into labor at any time.  Four doses of morphine later, the nurses informed me they had never seen anything like it and told me they needed to restrain her.  As they went for the restraints, something in me snapped and I informed them they would not be tying my child to the bed.  So after the worst 20 minutes of my life, they finally moved us to another room where John could join us.  She continued to struggle and it was quite sometime before she would drink anything and stop screaming long enough for her oxygen levels to stabilize.  
Finally, we were on our way home.  The nurse assured us Macie would fall asleep in the car and would most likely sleep the rest of the day/night.  She couldn't have been more wrong.  Not only did Macie not fall asleep, she continued to scream and thrash for the entire day.  We tried everything to get her to calm down, games, stories, cupcakes, slurpees, etc.  Finally, after 11 hours of screaming, she fell asleep...
Just looking at this picture breaks my heart.  It was such a hard day for so many reason.  Seeing our little girl in so much pain was completely heart breaking.  We were mentally and physically exhausted.  As soon as Macie fell asleep I finally let it all out and had myself a good long cry.  Unfortunately her slumber was short lived and she awoke just an hour later to start up again.  It was as if she was terrified to fall asleep again, she would doze off for a few minutes and than wake up screaming crazy things...  

That night the boys came home from Grandma's house and Macie wanted nothing to do with them, she refused to even look at them.  The next day when my mom stopped by to visit, she had a meltdown and again refused to look at anyone.  However, after the initial first few days, I felt we started to get our sweet little girl back.  Playing with her brothers was the best medicine we could give her.  Though she complained every now and then over the next few weeks, she really seemed to heal quickly and was soon back to normal.  She even insisted on going to church just 4 days after her surgery. 

A few weeks later, I asked her what she remembered about the surgery and shockingly she remembered EVERYTHING!  She started to talk about the blood and hitting mommy and everyone holding her down...then she suddenly stopped talking and got a really strange look on her face.  John advised me to never bring it up again!  Though I have followed his advice, every now and again Macie will say, "I still remember my surgery Mom!" As if she somehow knows how desperately I wish she could forget, especially if we have to do it again. 

Macie was absolutely thrilled with the outpouring of love shown to her.  We had friends and family dropping off treats, flowers, coloring books, etc.  Though it was extremely difficult, I truly felt that Heavenly Father was aware of our baby girl and that everything would be okay.  The success of the surgery isn't black and white, we still aren't sure how successful it was.  Her eye went from an 80% turn to a 30% turn (crossing in).  Lately, it seems like its not turning at all.  However, we have yet to determine if she is using both eyes simultaneously.  Right after her surgery she would tell me one eye saw dark and one eye saw light, but now she says they are the same.  

We have started red-green therapy to see if we can train her to use both eyes together, now that they are aligned...
The first few times were not very successful and I haven't pushed her too hard, but plan to get started on it again.  We also have increased the patching time to 4 hours a day.  Her vision has continued to improve so the doctor has been happy with that.  We will need to continue to patch her for another few years and eventually hope to tapper off.  The surgery can be needed again and again if we stop patching too soon, so we are happy to do it.  After a rocky first year of patching, Macie really doesn't mind it anymore...it's just part of our day.      
We see the ophthalmologist every six weeks and our last visit was a little disappointing.  Though the surgery was successful in aligning her eye, she still does not seem to be using both eyes together...which means she has no depth perception.  So far she has failed every 3-D test the doctor has given her and he basically said at this point she probably will never see the way we do.  Her world is flat.  He assured me that this is not a handicap unless we treat it as one.  She is capable of doing any and every single thing her little heart desires...well, except fly a plane.  Somehow her brain has adjusted, she can gauge distance, just not the way we do.  Having said that, I still have hope that with more therapy she will be able to start using both eyes together.  I have also accepted that she might not, and that is okay.  She is the happiest, spunkiest little girl I have ever met and if she see's the world different than you or I, that too, is okay.

2 comments:

  1. I just happened across your blog. My new friend of two years now uses each eye individually and can not see 3D and I would have never known if she had not said something. She said since its all she ever has known that she adapted. She lives a completely normal life. There is a hope for your little girl- it does not have to be a handicap for her!

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  2. I got teary eyed reading this! I can't even imagine having to go through that as a little girl, and how stressful it must have been for you to have to watch her in so much pain- especially when pregnant! Breaks my heart! She is such a beautiful little girl, and we'll be praying for her. You have a great attitude about it, and I loved what the doctor said about it not being a handicap unless you treat it like one. From what you've said about her, and how spunky she is, nothing will hold her back!=)

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