I See, You See, We All See Like Max Sees!

Ok, maybe not. Max sees a little bit differently than the rest of us. Or a lot bit differently. It's been blogged before, but Max has strabismic amblyopia. Strabismus is a condition where the eyes don't align together and therefore do not focus on the same point. In adults this can cause double vision. In young children, the brain can suppress images from one eye, and only read images from the eye that tracks correctly. This can cause amblyopia in the strabismic eye when the brain effectively shuts down the underused eye, resulting in underdeveloped poor vision in that eye. This eliminates double vision, but results in one eye with normal vision, and one eye with poor vision.

Max in April 2009 (two-years-old). His left eye is tucked in toward his nose, while his right eye looks forward.

Max in April 2011 (four-years-old).

 To treat strabismic ambliopia, patching is often used to cover the strong eye, forcing the brain to recognize images from the weak eye, effectively "turning it on". We patched Max's good eye off and on for about two years, with little success. When that didn't work, his eye doctor prescribed surgery to correct his strabismus. This would help his eyes to track correctly, but he would forever have amblyopia as it would not treat his poor vision in his left eye. Not comfortable with this recommendation we sought out a second opinion from a pediatric ophthalmologist.

Max with an eye patch, June 2011.

The ophthalmologist recommended against surgery at the time, instead prescribing treatment that would help correct the amblyopia first, and then she would work on the strabismus later. Max was prescribed atropine—drops that were administered to his good eye every other day. This caused his good eye to dilate, effectively blurring his vision in that eye and forcing his brain to recognize images from his poor eye on a 24/7 basis. We followed this procedure for seven months, placing a drop into his good eye every other night before bedtime. The results were amazing! His visual acuity increased from 20/100 to around 20/30 in his poor eye. His vision also increased in his better eye from 20/40 to just over 20/30!

When Max's doctor felt his vision had improved enough, she talked to us about surgery. Sometimes, strabismus can be treated with an eye patch or atropine drops, but Max's was severe enough that only the amblyopia had diminished, and there had been little effect on the strabismus. She suggested that surgery was the most effective option for Max at this point. She walked us through the procedure, explaining that the eye muscles attached to Max's eyes would be severed and reattached in different places, which will allow his eyes to track together in harmony. The surgery has an 80% success rate, something that we were obviously concerned about, but ultimately felt comfortable moving ahead with.

Something that we didn't expect through all of this, was learning how common strabismus is in young children. There is another young girl in our ward with it, who has been patching and has just moved on to the atropine drops as well. Our neighbor's daughter had multiple eye surgeries to correct hers, and another neighbor wore patches as a child. One of my coworkers also wore eye patches as a child. Max's doctor performs eye surgeries to correct strabismus (along with other ailments) in children every Friday. We were comforted to know that we are not alone, but also shaken by the fact that there are so many other families out there who are dealing with this as well.

We scheduled the surgery, and tried to prep Max for it as best we could. Two weeks before the operation we met with Max's eye doctor and she answered many questions and showed us using a scale-model of an eye exactly where the muscles were located on the eye, and where they were going to be reattached. It was during this visit that Max realized his eyes were going to be cut. For a child that freaks out at the smallest scrape, this was not good news.

That night, as I was putting Max to bed he told me that he was scared. I tried to console him as best I could, telling him that he would be asleep during the surgery and wouldn't feel them cutting his eyes. I also told him that it was OK to be scared. It was normal. I reminded him that Shayla and I would be there the entire time, and we wouldn't let the doctors do anything to him that would hurt him. Naturally he was still apprehensive about the whole thing. I then reminded him that I had a tooth pulled a few months ago. I told him that this was also a surgery, and that I was scared for it as well. The doctors had to put stitches in my mouth, much like they would have to do for his eyes. He seemed to relax a little more when he realized that I had gone through a surgery as well, and knew a little bit about how he felt. I'm sure in his little five-year-old mind, his fear was much stronger than mine, not to mention that I think anybody would rather have tooth surgery than eye surgery.

As the day of the surgery crept closer, Max would often talk to us about being scared. Shayla promised him that if he was brave during the surgery we would take him to Chuck E. Cheese when his eyes had healed. This was a stroke of brilliance on Shayla's part. Max has been wanting to go to Chuck E. Cheese for quite some time now. One of his friends even gave him a game token from the restaurant which Max has carefully saved for an opportunity to use it. This promise gave Max something to look forward to, instead of just something to be scared of.

Max's dreaded day finally came. After dropping Isla off at her cousin's house we took Max to the hospital. We waited in the lobby for a few minutes before going back into an examining room. It's hard to know what's going through a child's mind, but Max was happy. He was still in his pajamas, he had his favorite blanket (HUGE thanks to Heather again for retrieving this blanket) and he had his stuffed dog, Harley. He was joking around with me and seemed to be enjoying himself.

Waiting in the hospital lobby.

After being taken back to the examining room, he quieted down considerably. We were instantly surrounded by doctors and nurses, and the whole scene was even a bit overwhelming for me. I can only imagine what he was thinking. Max wanted to change his pajamas into some that were a little more comfortable, and after a quick potty break he was back on the gurney in the examining room. The anesthesiologist tried to get Max to take some medicine, to which Max flatly refused (no surprise there). A few more doctors and nurses came in and introduced themselves, talking to Shayla and I about what was going to happen. I wished they would have talked to Max instead of us. After all, he was the one having the surgery.

Preparing for surgery.

When it became apparent Max wasn't going to take the medicine, the decision was made to move ahead without it. I forget now what the medicine was called or what specifically it was for, but I think it probably had something to do with helping his body handle the effects of the gas that would be used to put him under. Max had successfully been put under before without any prior medication, so I wasn't too concerned about him going without it. Also, when Max was put under the first time, it was actually a pretty good experience, and something that Max did without much fuss or fight at all. I held Max on my lap as the doctors then told him to place the mask over his nose and mouth and breathe in and out to inflate the balloon on the machine. In the days leading up to his surgery, we often talked about that and I told him he would be able to do it again. He wasn't necessarily excited about it, but he didn't seemed too concerned about it either.

On the day of his eye surgery, Max was wheeled into the operating room and was immediately and forcefully held in place by nurses as the anesthesiologist forced the mask over Max's little face and held it there as he struggled, cried, and fought against it. It made my heart break to see him fall asleep like this, and in the immediate rush by the medical staff I tried my best to be there with him, desperately trying to calm him down as the gas filled his lungs and he fell asleep. As I left the room I looked back and saw a sad expression frozen on his face as tears dropped from his cheeks onto the bed underneath him. Had the doctors explained to me before we went into the room what their plan of attack was, I could have told them that Max would sit on my lap and take the gas without a struggle. Instead, I think they were thinking to past experience with tough-to-sedate children, and their preferred method was not in line with what Max and I were expecting. I guess I can't blame the medical staff for their actions. Dealing with uncooperative children has probably led them to their methods. A personal touch and a brief consultation of how they were going to handle things would have gone along way, however. I hated leaving Max in the operating room on that final sad note.

Back in the examining room with Shayla and Wyatt I felt much better. I really do like Max's ophthalmologist and she would be performing the surgery. Unlike the hospital staff, she always took the time to explain things and answer questions. I knew that she cared for Max's vision and that he was in good hands.

We waited in that little room while Max's eyes were operated on. After about an hour-and-a-half I had to take a bathroom break. When I came back Max's doctor was in talking with Shayla. Max's surgery was finished and he would be waking up soon. She spoke to us about the post-op procedures and what to expect, and as she talked a nurse stood patiently and quietly at the door. After several minutes, the nurse finally spoke up and told us that Max was waking up and we needed to be there for him when we woke.

I rushed back to a small, dark recovery room with the nurse to find Max writhing on a bed, crying out for his dad to come get him. His eyes were shut tight and slightly swollen. Bloody tears stained his cheeks. I immediately rushed to his side to let him know I was there. Again, I wasn't very happy with the way the hospital staff had handled things. I found myself mentally asking why the nurse had stood silently by the door for so long when she knew Max was waking up in another room. She could have easily jumped into the conversation to let us know. I brushed my thoughts aside to focus on Max. I tried to pick him up to hold him, but another nurse, who had been there with Max while he had woken up, blurted out, "Oh no, you can't pick him up." I calmly said, "I'm his dad, I can hold him." The nurse then told me that I had to sit in a chair next to the bed and that he would lift Max out and hand him to me. I'm sure they have their rules they have to follow about moving patients, but as I sat in the chair while Max cried on the bed, I thought this was a bit overkill.

A few minutes later, Max was finally in my arms. He quickly calmed his screams down, although tears continued to stream from his eyes. As I held Max he told me that he wanted an ice pack to place over his eyes. I asked one of the nurses if they had any ice packs. "An ice pack?" she asked. "Yeah, an ice pack. Do you have one?" "He's not going to let you put an ice pack on his eyes", she retorted. I was beginning to get a bit irritated now that no matter what I said it seemed I was always being rebuffed. It was as if they knew my child and how to handle him better than I did. I told the nurse that Max had just asked me for an ice pack. "Oh, he did? Are you sure he wants one?" I asked Max, "Do you want and ice pack?" he nodded his head. "Oh, OK." said the nurse. "I'll get him an ice pack." The hospital's idea of an ice pack unfortunately wasn't what Max had in mind. They gave us a plastic bag filled with ice and covered with a towel. Max screamed when I placed it on his eyes and told me he didn't want that one. He wanted an "ice pack" that my mom had made for him just about a year ago. This ice pack is shaped like a bird and is filled with rice. When it is frozen the rice gets cold and the soft fabric is soothing against the skin. OK, I thought, let's get this kid home so we can get his ice pack. The nurses finished checking equipment and monitors and then we were moved into a wheelchair and wheeled down the hall to the room Shayla was waiting in.

Once in the room, Max was again hooked up to monitors as I held him on my lap. He cried and occasionally would kick and scream that his eyes hurt. It was painful to watch him like this. After about thirty minutes, we were out the door and on our way home. Immediately after leaving the hospital room, Max stopped crying. He still kept his eyes closed, but the tears stopped rolling down his cheeks. I think he slept for most of the thirty minute drive home.

Post-surgery.

 Once home, we got his ice pack and laid him down on the couch to rest. He never opened his eyes once. His doctor told us that his eyes would feel pain but that much of it should diminish by the end of the day, and that by the end of day two most of the pain would be gone. Max, of course, would cry occasionally throughout the day, and we would dry his bloody tears as they fell. He was pretty calm most of the day though. He watched three movies, all without opening an eye even just once. We played with his Geotrax train set, his Trio building blocks, and he ate lunch and dinner, and he never opened an eye. I imagined it was much like what a blind child would do, and Max was a trooper and never complained once about not being able to see.

Max and his ice pack.

 That afternoon, while Max was taking a nap, his Primary teacher stopped by with a gift for him. We gave it to him when he woke. He began to open the present with his eyes closed, but the anticipation of knowing what it was turned out to be a bit too much for him, and he slightly peeked to see what the present was. After that, it was eyes closed and he played with it until bedtime that night.

Blindly opening his present.

 Saturday morning came and Max still didn't want to open his eyes. As Max's T-ball coaches, we had to attend the league's opening day acactivities that morning, which included a parade through a nearby neighborhood. We asked Max if he wanted to go, or if he wanted to stay home with Shayla while I went to help with the team. After initially deciding to stay, he changed his mind and opted to go. We arrived at the parade staging area and met up with his teammates. Max kept his eyes closed. We walked along the parade route, his hand in mine as he blindly walked along. After about ten minutes I could tell he was starting to drag his feet a little and I asked him if he wanted me to carry him the rest of the way. He said yes.

Max (second from the right, without his hat) and his T-ball team getting ready for the parade.

We finished the parade with him in my arms and his face buried in my shoulder. After walking the parade route, we went along with all of the teams in the league onto a baseball field where we sat and listened to a few speakers. Max laid on the grass with his head in my lap, his eyes closed tight. After it was over we headed for home. I was proud of Max for wanting to come along, even if he didn't open his eyes at all. His teammates all asked him why his eyes were closed, and I explained to them that he had had eye surgery the day before. They were all very good about it and made sure he had a place to walk with them and help hold the team banner. I was a little sad however, as the league goes all out on opening day. There was an entire parking lot full of bounce houses and activities for the kids. Of course Max wanted to play, but understood that he wasn't able to with his eyes not yet ready for strenuous activity, and he never complained about not being able to join in the fun. On our way back to the truck we walked by a corner stand that was selling giant donuts, so we bought a few and enjoyed them on the lawn.

After the parade, sitting with the team on the baseball outfield.

 The rest of the day was much like the first. Max "watched" a few movies with his eyes closed, and even played Angry Birds for a few minutes. He would run the controls and ask me if the bird was in the right spot before releasing it to crash into the pigs. I was quite amused with his determination to not let his lack of vision stop him from doing things he enjoyed.

That evening, just before dinner, Shayla asked Max, who had just been laying on the couch for most of the day, if he wanted to do anything. Max told her that he wanted to do a science experiment. When Shayla asked him what he had in mind, Max replied that he wanted to cook ketchup. Max's mom pulled out a pan, placed it over low heat on the stove, and let Max squeeze ketchup into it. Max stirred it and added a few other ingredients; banana peels, lime juice, salt and pepper, and strawberries. One of the strawberries had a long stem attached to it. On the other end of the stem hung a small, green strawberry. This is when Max finally opened his eyes. He didn't open them very wide, he was squinting as he looked, but a double strawberry was too tempting to not see.

Max's double strawberry.

 After nearly two days of blindness, we were glad that Max had finally opened his eyes. He kept them open for most of the evening. And I took advantage and helped encourage him to keep them open by playing with him.

Sunday was the next day, and when he woke he again didn't want to open his eyes. We let him sleep late, and so I stayed home with him while Shayla, Isla, and Wyatt went to church. After a few hours Max wanted to play with his Trio blocks, and he finally opened his eyes again.

A few of the movies he had "watched" while he was blind were rented and were movies he hadn't seen before. Now that he had his eyes open, he naturally wanted to watch them for real.

He is doing much better with his eyes now. He will still occasionally complain about sore eyes, but for the most part he seems fine. He does seem a bit more mellow than normal at times, and he seems to be very cognizant of his situation, being careful to not rub his eyes even though he really, really wants to. His eyes are very red, when we do get a chance to look at them, and it's easy to see that they are still in the healing process.

Max has handled the whole thing much better than I could have expected. I am amazed at his bravery and the maturity he has shown with dealing with the situation. He is very understanding of what has happened and knows why we had to do it. Of course he doesn't like it, and has told me a few times that, "We should have scheduled the surgery for 190 years!" but in the end I know he understands that his eyes will get better and that he will be able to see much better once he heals.

Max, two days after surgery.

 I've had him look at me a few times, although he doesn't like focusing for too long on one point. He has been good about it though and doesn't complain, even though I know this causes him a bit of discomfort. His eyes, although blood red, do look much better than before. Right now, from the little I've seen, his eyes are lining up together. His eye doctor told us that his eyes will continue to be all over the place for the next couple months as his brain learns to control them with the new muscle locations. In the end though, his brain should be able to pick up on the change and learn to control his eyes together. With the increased vision acuity in both of his eyes, this will help his brain use both eyes in tandem, and that with continued vision therapy, it won't revert back to using just one eye again. As a side note, right after the surgery his doctor told us that Max has very large eye muscles, much larger and thicker than most children his age. This was pretty awesome knowledge for Max!

 I'm glad the surgery is over, and hope and pray that he continues to heal quickly and doesn't suffer any complications or setbacks. I hope we made the right choice, and that his vision will be much better for him throughout the rest of his life. Decisions like this are never easy. If it was left up to Max, he probably would have just gone on without the surgery, but I hope that years from now, he will be thankful that he has had it.