November 30, 2011

Miles Update

Yowza.  We've been through one crazy day and a half.  Miles had the first of two eye surgeries yesterday to correct his ptosis (droopy eyelids).  Y'all, I was a nervous wreck.  I love the way that Miles looks and I knew that the surgery would alter his face so much.  I mean, those sleepy eyes are kinda his trademark look and it absolutely broke my heart to do anything to them.

When Miles came home from Congo, multiple eye doctors told us that he would require corrective surgery.  Since we were having so many other medical issues and emotional issues with Miles we put it off and just kept up our visits to the optometrist every 6 months.  The last time that we went, the doctor told us that we really couldn't put it off much longer.  By not having the surgery we were risking permanent damage to his eye (which has already changed shape to compensate for the part of his pupil that is covered by his lid) and substantial vision loss.  Not to mention that Miles had to tilt his head back so far to see out from under his eyelids that neck problems and balance problems were beginning to emerge.

Our surgeon opted to do two different surgeries- one eye at a time 2-4 weeks apart.  Sometimes the swelling after one of these surgeries is so severe that the eyes swell shut and if both eyes were swollen shut at the same time, it would be too difficult on a little one.  We went in for the first surgery on the most severe eye yesterday.  Miles' right eyelid covered almost 40% of his pupil so we opted to do that one first.  I can't imagine walking around having the top 40% of the world be blurry and off color, but my little man has been experiencing the world off kilter for his whole life.

Prior to this, Miles has been hospitalized three previous times that required anesthesia.  Even though he is young, he remembers those times vividly.  His anxiety level shot through the roof as soon as we pulled into the parking lot of the hospital.  I had flashbacks of one of our darkest days ever when we took Miles to have an MRI of his brain and he bit the nurse until he drew blood and beat his head against the floor until they had to sedate him like a wild animal.  It was the lowest of our low points.  I was quickly drawn back to the present when I felt Miles' death grip on me while we walked in the hospital.  He wanted ME.  He knew that I was there to protect him.  My presence was comforting to him.  It was a far different reaction that our previous times at the hospital where he looked at me like I was Satan taking a lamb to the slaughter.  Sometimes it's hard to see how much progress he's made until something like this happens to remind me that he's come so incredibly far from that scared, little, wild boy that he was just a year ago.  I'm so proud of him.

We are so fortunate to have a rockin' awesome children's hospital in our area.  They are always so great to Miles.  We asked for an anti-anxiety, calming drug immediately and they loving brought him a cup of "loopy juice" to help his nerves.  They set us up in a great room and turned on the movie Cars for him.  I asked if they would wait and do all the procedures that they needed to do until he was under anesthesia and they obliged.  They didn't even try to take his temperature or blood pressure or anything.  Thank God for understanding, rock-star nurses who were sympathetic to his trauma history and were so loving to him.  He got good and relaxed and watched a movie and stuck stickers all over himself until it was time for him to go back for surgery.  They wheeled him away and I had a good cry over how my handsome boy would look so different from that little, droopy eyed baby I brought home from Africa. 

My sweet little boy who (in his drug induced stupor) decided to cover himself with stickers just before they took him back for surgery.

The surgery took about an hour and a half and then the surgeon came in to talk with me.  The surgery, he said, went beautifully and that Miles was a champ.  He tried to prepare me that Miles' eye would look very gruesome for a while.  No amount of preparation was going to get me ready to see him.  He looked like he'd been locked in a cage with a professional boxer.  He cried a little coming out of the anesthesia and when he cried there was blood in his tears.  As a mom, there is nothing that hurts worse than seeing your child in pain, and watching those bloody tears roll down his cheeks shattered my heart.  He chugged two slushies and they deemed him ready to come him.  Outpatient surgery will never cease to blow my mind.  One minute you are being cut into and the next, you are being sent home.  I carried that limp little bundle to the car and off we went towards home.  It only took about 5 minutes for the screaming to start.  I had warned the doctor that Miles' pain tolerance was low and that given his history it would be best to have him in as little pain as possible.  He assured me that Tylenol would cover it and I naively believed him.  

Miles was in tremendous pain.  He couldn't stop crying and writhing in pain and saying over and over, "My eye is huwting!"  Finally I called the doctor's office and they called in some pain medication for him.  The doctor told me on the phone that he was sorry he didn't listen to me and told me that I could say, "I told you so" if I wanted.  I briefly thought about trying to take the high road, but I said it anyway.  We dosed him up with hydrocodone around 7pm last night and he took a 13 hour snooze.  His body and his mind had been through more than he could handle and sleeping it off was truly the best thing for him.  He woke up this morning doing so much better.  A large portion of the swelling is gone and the pain is manageable.  He's resting quietly on the couch (which is something he NEVER does) but he's in good spirits and enjoying having total control over the TV channels.

He'll have to miss over a week of school and is not supposed to do anything exciting or strenuous for 10 to 2 weeks days, but that just means that we have more time for extra cuddles and TLC while he recovers!

Yesterday, we couldn't even fathom making light of any of this, but this morning when the swelling receded some and Miles was in good spirits, I looked at my husband and said, "Do you remember that part in the movie Hitch where Will Smith ate something he was allergic to and swelled up all crazy like? Miles looked just like that yesterday!"  Yep- we both agreed that our little Miles was rolling Big Willie Style.  Thank God it doesn't look like that today!

Will Smith in Hitch.  This is a close resemblance of  what Miles looked
like yesterday- minus the swollen ears.

If you are the praying type, please pray that he will continue to heal and pray for strength for him since we'll be repeating the whole thing in a few weeks for the other eye.  Thanks!         


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