Surgery #2
Two week after the first EUA they wanted to do another. Our doctor thought about waiting a month but decided he was too worried thing would progress quickly so we cut the time in half. It's a good thing we did... Things had progressed significantly! The traction now from the retina pulling nasally left no choice but to do as much surgical intervention as possible. If we let things go it would pull a hole in the retina and eventually tear the little retina he had beyond repair.
Due to the entanglement of things our surgeon wanted to do his best to perform a vitrectomy on both eyes. Removing the vitreous allows them to get to more areas of the retina to laser, make repairs, and potentially do a reattachment surgery. They went in through the sclera with microscopic tools. It took several hours. Waiting is the worst. Because they've never seen eyes quite as bad as Will's we never know how successful the procedures will be until after. Waiting not knowing if your son has a chance of sight or not is excruciating. We were also explained that this procedure it extremely hard to do without removing the lens too. While the lens does not have an impact on sight it does play a key role in the health of the eye itself. Yet another thing to worry about in the waiting room.
When Will was out of surgery it was more disheartening news. While they were able to keep the lens, due to the traction of the retina they were unable to remove all of the vitreous. Our surgeon explained the retina was in the way and preventing them from getting all of the vitreous out. If they attempted to remove it all they would likely sever the retina completely. They removed as much as they could and lasered new areas hoping that would be enough to slow or stop further detachment. Dr. Sears explained Will was the worst case he had ever seen and that the likelihood of any sight was minimal at best depending on how things progressed. Now it was a wait and see game.
Nothing could have prepared me for seeing Will after surgery. This surgery was like any other. When I walked into the room Jon had already seen Will and stopped me at the door. He told me to prepare myself as he looked worse than he did after his first surgery. There was my baby boy all of 10 weeks old patches on his eyes, bruises on his face, blood on the bandages, and trying to cry yet unable to due to being hoarse. I sobbed uncontrollably as the nurse handed me my baby.
We stayed that night in the hospital. Will was up every 2 hours in discomfort, it felt like a nightmare. All I wanted to do was take the pain away and I couldn't. Those cries will stay with my forever.
Surgery #3
After an in office visit on a Wednesday our surgeon could tell things had changed dramatically and getting in for surgery again fast was imperative. We didn't quite know what to expect going into the 3rd surgery but we knew it'd be a big one. We got the call on a Thursday that they wanted to do surgery Monday at 7:30 am and the precedential debate was on Tuesday in the building across from the Cole eye center. I scheduled a COVID test for next day and frantically started calling hotels. Almost all were booked The only hotel that still had room was the 5 star hotel attached to the clinic itself. $289 a night was their clinic patient rate with $40 a night for parking... It was our only option we had to book it.
Day of surgery Will goes under and 10 minutes later our worst fears were realized. The surgeon explained to us that the traction had continued and pulled a hole in the retina. At this point the damage was done and there was no option but to push forward with removing all of the vitreous and doing anything else surgically we could. Because the surgery was so risky the surgeon wanted to only perform it on one eye. He believed chances of sight were minimal so it was only worth risking it on one eye so he chose the left.
They performed a full vitrectomy, retinal reattachment, removed damaged retina and macula, place silicone oil in the empty space, and lasered EVERYTHING. Hours later we were told if everything held he had a chance at 20/800 vision. this would be best case scenario.
After surgery again Will had a patch on the one eye with blood on the bandages. We decided to stay in the Hospital again with an early morning recheck. With him having a retinal reattachment and the silicon oil in his eye it was explained to us that he would have to be face down for 72 hours no exceptions. Then He'd need to be either face down or vertical for as long as possible after that. How do you keep a 3 month old face down that long, and how do they sleep...???
I still had PTSD from the first hospital stay and lack of sleep, I couldn't so it again so soon. Dad was a trooper and took one of the worst hospital nights by far. Will was up every hour or two crying in pain. There is only so much baby Tylenol can do. Dad took one for the team in a big way. Will was up every 2-3 hours crying in pain. The next day I came to relieve Dad with Starbucks. Within 10 minutes of taking Will into my arms he had his first bowel movement since surgery and it went everywhere! We attempted to do our first face down poopy diaper change and it was a fail. My pants were covered. I washed them with hand soap in the sink and the Nurse gave me a pair of XL scrub bottoms. It was the morning of the presidential debate so once it was all said and done we walked back to our car with a face down baby and me in huge scrubs past police, national guard, and news media. A handful of people congratulated us thinking we had just given birth.
top left: car ride home Top right: eye 2 days after surgery Bottom: positioning for sleep
Surgery #4
From what the doctor could see the Retina was still attached and the surgery had stabilized that eye. With the left eye looking good it was decided it was worth taking the same chance on the right eye. Fresh out of the nightmare surgery we were headed right back for a repeat.
Same surgery, same wait, VERY different result! While they were able to perform the vitrectomy, reattachment, and scare tissue removal there was no hope for for sight in the right eye. Our surgeon believed that the right eye would have no vision. It was such a defeated feeling to know that despite all our exhausted efforts that eye was a lost cause. While vision wasn't possible the surgery did serve the purpose of keeping the eye healthy and hopefully ensuring it would grow normally despite everything it had been through.
Another rough night in the hospital with little sleep. Another long drive home with Will face down. The positioning was another long 72 hours facedown. I cannot thank all of our family enough for their physical and emotional support. We would not have made it through those rough days without them. While there are a lot of people to thank my mom and Jon's mom in particular were crucial to this process!
The End Result
A few weeks later I had been noticing Will's lack of reaction in the morning when I turned the lights on in his room. One morning I decided to test my suspicions. It was early in the morning Will was awake talking in his crib. I stood by the crib and had Jon flip the light on. Sure enough after all night in the dark there was no reaction from Will. He used to blink and react when the light came on in his room, walked outside on a sunny day, or even walked past a window. In a matter of days he no longer saw light from dark. The next several days Dad and I continued to shine lights in his eyes looking for any reaction. We went for a emergency office visit with our surgeon and our worst fears were confirmed. Despite the retina still being attached Will was no longer light sensitive. Our surgeon could not tell us why or how but despite all the surgeries the disease continued to take Will's sight. I cannot describe how defeated we felt.
Today!
This week we went for our first exam since the beginning of December. While we try our hardest not to get our hopes up we always hope for good news as we are clearly overdue for some. After almost 3 hours waiting in the lobby it took our surgeon a total of 10 minutes to confirm both retinas had detached completely. Will has no vision he sees only darkness. A lot of people have been asking about scientific advancements. I will try to address more of these in a future post but the short of it is that there is nothing at this time that can help Will. Knowing he's blind and hearing confirmed by the expert are 2 totally different feelings.
While we always hope for more Jon and I have decided to be gratefully for the happy healthy boy we have been blessed with and accept and prepare for the lifetime of blindness that he will more than likely be faced with. The sadness is a part of our daily lives now thinking about the beautiful world and colors Will won't be able to see like us. We know we will make certain Will sees the world in other ways and lives a fulfilled life. However it is moments like these that certainly overwhelm and depress us the most. Thank you for everyone's continued thoughts and prayers!
Please feel free to comment with any questions and stay tuned for more insight into our new visually impaired world.