I'm sorry it has taken me this long to update how Dust is doing since his surgery.
Everything is just so dramatic, and to be honest - we are tired of all the drama. This roller-coaster is starting to give us motion sickness!
The surgery was about five and a half hours. They first fixed Dustin's trach scar because it had a lot of scar tissue tethering it to his throat. Then they went in and dissected all around his left eye and tried to clean up all the scar tissue to release his eye so they could pull it forward. They went clear back, right next to the optic nerve and were able to pull it forward a few millimeters. In fact, one of the doctors told us, "I've never been that far into the back of the orbit." Gulp. They wanted to be able to pull it out more but it just wouldn't. They said they really tugged on the eye. Gulp. Gulp.
They put a plate next to his nose to try to prevent scar tissue from forming and obstructing movement of his eye. And they put another plate under that eye.
They came out of surgery not totally thrilled with what they were able to do. They weren't able to do anything with pulling his eyelids closer together because the tendon is too flimsy. They were afraid it would do more damage to mess with it.
We all kind of felt down about it. But Dust's sister Stacie said it so well when she said that she thought, "No, they did exactly what they were supposed to do."
They didn't end up doing anything to Dustin's right eye, but have now decided they want to go in and do exactly what they did to the left to the right... Soon. Awesome.
Prepare, anxious waiting, severe pain, swelling, missing work, missing kids, sleepless nights. Rinse. Repeat.
For days we knew that Dust could still see after this surgery, but we didn't know how much. He was in a lot of pain and on a lot of meds. He would only say that he could kind of see, but he never seemed worried about it. I don't think anybody wanted to push the subject and make him worry so we just left it alone.
We came home from the hospital on Friday. The kids were so glad to have their daddy home. Cole and Haley have been all over Dust. They really missed him while he was away. It was funny - I'm not sure Haley recognized Dust in his hospital bed, because she was kind of scared at the hospital. But from the moment he got home, she just couldn't get enough of him.
On Saturday, he was able to open his eye on his own. Early in the day he told me that everything looked really tilted to the left. I thought it was strange, but tried not to worry.
Then while he was in the shower he told me there were two black holes in his vision. That's when I got nervous. That could mean more damage to the optic nerve.
He didn't want me to tell anyone. Our lives have already been so dramatic, I think he just wanted to lay low and not draw anymore attention to himself.
Whelp, there we went again. Another test of faith. He stayed very calm and got on his knees while I called the doctor.
The resident on-call said, "Well, you knew it was a risk. You were operating with an already tentative nerve."
..... Then come the pokes from the adversary.
"Maybe we shouldn't have done the surgery."
"Were we being greedy by wanting more vision?"
"Was everything that we experienced real or was it in our heads?"
"Has it all just been dumb luck? And now we have really pushed that luck?"
"Are we just supposed to sit and wait with faith for another miracle?"
To which Dustin told me, " No. We will do all that we can do and The Lord will do the rest."
This scare really caused us to take step back and check if we knew what we knew that we knew. (If that makes any sense). This paragraph from an Elder Holland talk kept replaying in my head.
"Like Moses in his vision, there may come after the fact some competing doubts and some confusion, but they will pale when you measure them against the real thing. Remember the real thing. Remember how urgently you have needed help in earlier times and that you got it. The Red Sea will open to the honest seeker of revelation. The adversary does have power to hedge up the way, to marshal Pharaoh’s forces and dog our escape right to the water’s edge, but he can’t produce the real thing. He cannot conquer if we will it otherwise. “Exerting all [our] powers to call upon God,” the light will again come, the darkness will again retreat, the safety will again be sure. That is lesson number one about crossing the Red Sea, your Red Seas, by the spirit of revelation."
(Great, great, great speech by the way)
We had prayed so hard for months about this surgery. We never felt directed away from it. We felt like this was a good step toward Dustin's recovery. And we had decided we were going to be "agents who act, not objects to be acted upon."
It was a scary leap into the dark to go into this surgery. Wolves on every side, the sound of rushing rapids below the cliff we were standing on. But when we stopped to listen, we could hear a still small voice telling us to jump and He would catch us. Totally terrifying. Somewhat against logical reasoning, but more real than even the rapids below.
"Trust in The Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy path." (Proverbs 3: 5-6)
And though our experiences fade a little with time, there is no denying all that has happened. All I have to do is read my journal and the reality of what we have felt, seen and experienced comes rushing back. How I wish we could feel the strength and the power of that miraculous moment and all of our beautiful personal spiritual experiences all the time!
It was going to be ok. It was all going to be ok.
So, we decided to call Dustin's dad (who brought a close family friend) for a blessing and headed up to the Moran Eye Center.
They quickly found that the black holes were just blood inside the eye that will resolve over time, like a bruise.
The tilt could be from the swelling or it could be from damage to the Fourth Cranial Nerve. They were back there right by it in the surgery.
There is a test to measure the function of the Optic Nerve and Dustin tested the same as he did before the surgery. Whew!
He tested 20/100, but we have to coat his eye in ointment that is pretty much like smearing vaseline on your eye. So I can see why he can't really read the eye chart.
We went home knowing this but not much more.
When we got home, I asked Dust how he was able to stay so calm. "What's done is done. And if damage was done, we will deal with it. But I think it will all resolve. Either way it will all be ok."
I got a phone call from the doctor on Monday and we went to a post-op appointment on Tuesday.
She told us that if it is damage to the Fourth Cranial Nerve, unlike the Optic Nerve, it can heal over time - or there can be surgery done to fix it.
His eye is not moving very much so they put him on steroids to try to make the swelling go down so it can get moving and won't get stuck in scar tissue again.
During this appointment they decided to go back in soon to try to put the right eye into place.
Dust's right eye is turned in toward his nose. His eyelid wasn't functioning before and over the last few months has started to.
They thought that the right eye was turned in because the outer muscle was either dead or paralyzed. During this last surgery they discovered it was neither. The inner muscle near his nose is actually scarred down, tethering his eye inward. We are hopeful the next surgery will fix that.
He tested 20/50 at that appointment on Tuesday.
Sometimes I wish I could fast forward through all the nitty gritty heartbreaking details. Go straight from the day his vision returned to the day of full health and strength. Wouldn't that be nice?
This road is a lot harder and a lot longer than either of us ever could have imagined. But we truly are learning things we could never learn in any other way.
The black holes in Dust's vision are mostly gone now and he thinks the tilt might be getting better, but it's hard to tell because he doesn't have anything to reference it off of.
His eye looks to me to be in a much better position and in the CT scan he had on Monday, it is much more forward. It will probably drop back a little once the swelling goes down, but so far so good.
Since we got home from the hospital, Dust has been enjoying morning snuggles with our little munchkins and spending lots of time together as a family.
Dust has been wanting to get out of the house the past few days so we have been running errands, trying to get bids for our house plans. That has been something really fun to focus on.
He is doing better every day, which means we are all doing better every day.
Sorry if this post is all over the place. That's kind of where my head is these days.