Avery's Eye Surgery

Wednesday, August 8th, Avery had his surgery on his eyes at Cincinnati Children's Hospital.  As I mentioned before, the doctor wasn't for sure what the exact problem was or how to fix it until he could get him under anesthesia and look a little closer.  After about 30 minutes in the OR, Dr. Sisk came out to give us an update.  He said that Avery's left eye had lost peripheral blood flow, and in order to compensate, had tried to grow some new blood vessels in the center of his eye and some scar tissue had formed.  He was pretty confident he could fix it with lasers.  The right eye was more complex.  Avery had a central retinal detachment where the pressure of the blood vessels were literally pulling it away from the rest of his eye causing his pupil to be misshapened and also the formation of scar tissue.  Dr. Sisk also said that several adhesions had formed.  He said that the procedure to fix this eye was surgical involving several cuts to the eye and a tedious 2 hour surgery that would be like removing hard card board from wet tissue paper without tearing the tissue paper.  He said that if the retina tore, it would create other problems.

This wasn't great news, but it was pretty much what we expected.  So, we signed the surgery consent and headed to waiting room.  I don't think anyone ever gets used to sending his or her child off to surgery, regardless of how many times it occurs, and this time was no different.  I actually was more nervous than usual because it was clear there were so many risks involved in such a meticulous surgery.

After a few hours, we met with the doctor in the consultation room, and he said that the surgery couldn't have gone any better.  He was able to break the adhesions and separate the retina from the scar tissue without tearing it.  He also applied lasers to both eyes to reduce the pressure and improve circulation.  He said that it will take a month or two for the retina to start to flatten out on its own, and we won't know the extent of the impact to his vision for awhile either.  It's likely though that Avery hasn't had peripheral vision in his left eye or central vision in his right eye for quite some time.

Avery has to have another exam under anesthesia in a week and a half with possible touch up surgery to fix any issues that weren't fully addressed the first time around.  Dr. Sisk also said that Avery's eyes will most likely require cataract surgery in the future, and it's possible that what happened to his eyes in the first place may try to happen again since it is all caused from his genetic defect.  But now that we know what is going on and have a doctor that is going to be monitoring it, hopefully, we can protect his eyes as much as possible.

We are so thankful that surgery went well, and we know that many of our friends have been praying for him.  We sincerely appreciate it!  It seems like Avery just moves from one issue to another, and if the Lord doesn't heal him, he will continue to do so since Dyskeratosis Congenita is a progressive disorder.  But with each new diagnosis, we're believing that God is right there with us.

As Avery was waking up from the anesthesia, I was rocking him, and Phillip went out so that my parents could take turns coming in to see him.  Dad sat down beside me and shook his head because Avery looked so pitiful with his little eye patch on and big dressing on his chest from his port access.  I have to admit, sometimes I struggle a bit not to focus on the how unfair life can be.  Watching my little boy suffer and lose so much almost overwhelms me sometimes.  He can't walk, talk, express himself, or even eat anymore.  The possibility of him losing his vision just seems beyond cruel.  Then dad said something that helped put what sometimes seems like such an unfair situation in a little more perspective.  He said, "God could have taken Avery when he was born or you could have even miscarried, but the world needed Avery.  We needed Avery.  That's why God let us keep him."  Most of the time, words fall short.  It's difficult to hear things like, "God knew you were special people so He gave you a special child, " or "You'll love Avery however he is."  Although said with the best intentions, those kinds of things seem to belittle the grief and conflicting emotions a desperate parent feels; and yes, we're blessed with an amazing, special child, and of course, we couldn't stop loving him anymore than we could stop breathing.  (I certainly don't mean that to sound bad toward anyone!  I try to always understand where folks are coming from, and I'm really not overly-sensitive.  Sometimes it's just a struggle.  Hope you understand!)  But Dad has been there through some of Avery's darkest moments and knows about he has many days when he can't smile or clap, and he's listened to me cry to him or my mom when we are dealing with some terrible reality of his ugly disease.  I know I need my little guy and his snuggles an awful lot, and he has taught us - sometimes painfully - so much.

Here's a couple pictures of my little pirate!

Thanks again for the unceasing prayers and concern.
Love from the Hoskins family,
Bethany