When the world is full of chaos and fear of the unknown, don’t ever tempt the fates by asking if anything else could possibly go wrong—because it can, and it will! Rowan’s second eye surgery was done and over with. All of his appointments had been cancelled due to COVID-19 for the foreseeable future. We were a week and a half into the recovery phase and couldn’t be happier with the lift they achieved. Everything was seemingly calming down; despite the global pandemic we hadn’t yet had a chance to fully realize. *insert wrench here* We all know by now that life with Ro, is never that simple.
On Friday morning, March 20th to be exact, Rowan woke up with his entire eyelid red and swollen. It was warm to the touch and had what appeared to be a large abscess on the lid around three of his six incisions. He had been healing so well, what could have possibly gone wrong so quickly? Thankfully, we had been in daily contact with Rowan’s surgeon via text and sending photos to him throughout the healing process due to the complications he encountered during his initial procedure. We immediately sent him a few photos and voiced our concerns. He agreed it was likely an abscess and called in a script for antibiotics. He continued his daily calls to check in on him and make sure he was back on the right path—and for a couple days, we believed he was. The “fluid” we thought he had building up under the lid seemed to be going down, but the redness persisted. In addition to the redness, the scab on his inner eyebrow that covered the incision was rapidly growing. At first, we didn’t find that overly alarming because we encountered a similar experience with Rowan’s first eye surgery when he was just an infant. His skin has never taken well to dissolvable stitches and last time they burrowed out of the same location. However, it quickly took a disastorous turn for the worst when that scab started to be pushed away by whatever was burrowing its way out from underneath the skin this time.
Another series of photos were sent to his surgeon and within minutes of hitting send I received a phone call from his now very concerned doctor. “I believe that the actual cadaver tissue from the sling is what’s pushing through…” Ummm, excuse me, what?! Timeout. The next three hours following that phone call are a bit of a blur… Dr. Traboulsi quickly hung up the phone to get in touch with Dr. Hwang, the oculoplastic surgeon called in to assist two weeks prior. Within minutes we received a call back saying he needed emergency surgery to remove the material before the infection spread. They explained his body was rejecting the foreign material and they needed to reverse the procedure they had just done, immediately. My heart sank to my stomach and the lump in my throat was growing as I attempted not to have a nervous breakdown. As parents of a child with a rare disease, every choice we make is nothing more than an educated guess. Often, the doctors will divulge that they are unsure of outcomes regarding Rowan due to his atypical anatomy. So, when things like this happen, there is undeniable self-doubt.
In the midst of trying to process all this, we received a video call from the oculoplastic surgeon, and she agreed we had no time to waste. We made a few phone calls, threw together a suitcase, and loaded into the car bound for Cleveland. In the meantime, Ohio State Governor DeWine was holding his daily press conference where it was decided that Ohio would officially be locked down due to COVID-19. Great timing, eh? So, not only were we worried about another surgery in the midst of a pandemic… but within minutes of leaving our house, it was suddenly impossible to find an open hotel or place to stop and eat dinner—Cleveland is an approximate 4.5-hour drive from where we live. All of our typical go-to places were suddenly not an option and to make matters far worse we received YET ANOTHER phone call from Dr. Hwang: “I wanted to call and inform you that I was just notified only one parent will be able to accompany Rowan to surgery or at the hospital altogether. I’m so sorry.”
In that moment, I cannot even explain the wave of emotions that came flooding over me; fear, anxiety, anger, sadness… but, the best word I could use, is overwhelmed. Though, as always, we powered through and arrived at the hotel late at night after a long drive. We ordered food and ate cold Chinese in the dark after finally getting Rowan to sleep. We set an alarm for 4 a.m. and laid out our clothes—our usual pre-surgical routine. There was hardly any sleep to be had that night as anxiety set in. The next morning, we headed to The Cleveland Clinic as prepared as we possibly could be. We were greeted with temperature checks, sanitizing stations, a million questions, face masks… which, while this is now becoming the norm, then, it was just starting and our first experience with the new protocols. Cleveland was a hotspot for COVID-19 at the time, and we found ourselves in the city’s largest hospital—we were terrified to say the least, but what choice did we have? Thankfully, a very kind security guard let us both go back due to it being an emergency procedure. He has no idea how much that small, kind gesture meant to us. There was no going back to the OR with Rowan as usual to help him drift off to sleep. There were limited child life specialists on staff. And the kicker… Dr. Traboulsi, the doctor we have come to love and trust with Rowan’s care, was not allowed to be involved at all. The state mandated limited personnel in the surgical wing to cut down on COVID-19 exposure risks. Needless to say, it was an EXTREMELY long day! But, all-in-all, a good outcome. Rowan did once again struggle with anesthesia, but I will cover that in my next entry (a saga that’s deserved its very own post).
With the help of my mom and her good friend from college, we found an Airbnb to stay at over the next couple of nights until Rowan received the go-ahead to be discharged. We expected to return within three short months to discuss another surgery, but we have yet to return due to this pandemic and all of Rowan’s other procedures that have popped up since. Unfortunately, we can no longer do any more frontalis sling procedures due to the amount of scar tissue Rowan developed from these past three eye surgeries. They are also hesitant to use a silicone rod since his body rejected cadaver tissue. We will find out more when we finally make it back to Cleveland to discuss with Rowan’s Care Team—hopefully sooner than later.
It’s crazy to me that in the beginning of March we thought this pandemic had thrown a wrench in our plans. Now here we are at the beginning of September still doing temperature checks and sanitization stations with a million questions and a mask. Procedures and appointments cancelled and rescheduled more times than I can count. Teleheath appointments that have made me a proficient Zoom user. Teams, Jabber, and FaceTime also now mastered… We see our families through a screen and are careful not to travel outside the TriState area before a procedure. We have missed so many medical issues due to cancelled routine screens. I don’t know when this will all end and that is part of why this entry has taken months to complete. Now we have had a few of these experiences and are about to have yet another surgery in the midst of a pandemic. 2020 will for sure be a year to remember… Until next time!