An Unexpected Turn

There are some aspects of this journey I will never get used to and surgery and sedations will always be at the top of that list. They just plain suck with a capital S. With Rowan being MH reactive and not being able to have the gasses that allow you to drift off to sleep calmly before “the show starts” it complicates everything…especially this Mama’s emotions. So let’s dive into this horrific saga of Rowan’s second eye surgery, shall we?…

Hardly any sleep the night before if any…waking up to that insanely early alarm clock going off as a last ditch effort to get him to drink some clear liquids before he couldn’t for hours…that knot in the pit of my stomach getting worse by the second that makes you nauseous…the anxiety and anticipation building as we get around and head out the hotel doors on the way to The Cleveland Clinic…ya know, all the usual feelings…

I loaded him into his car seat holding back the tears and we drove to the hospital. A ten minute drive that seemed never ending with constant reassuring, “it’s ok buddy…” I think those words were more for me than him in that moment if I’m being honest. We arrived and handed our keys to the valet and began our now familiar walk to desk P20 on the second floor. We checked in and signed consents. Then the initial start to the waiting game began. About twenty minutes later they announced our name which instructed us we could then move down to desk M20…the actual surgical waiting room outside the PACU. Before Rowan could even get down to play with all the toys they had awaiting him there, it was time.

As I carried him back to pre-op I searched for familiar faces from last time scanning the hall for his surgeon and anesthesiologist. As we went over all the monotonous questions of recent travel, medical history and allergens I kindly reminded them of his MH reactive status. Something I had been sure to mention several times throughout appointments and scheduling after the last sedation disaster. Well shocker….it once again was not flagged in his chart and his care team was unaware. Here we go again….so the nurse began to explain to me that they would place the IV after he drifted off to sleep from the gas mask…I could continue to play this scenario out but those of you who have read my previous posts all know how this goes. So the next hour was filled with huddles and questions and the chaos of having to re-prep the OR, flushing all the lines and locking up medications to avoid any mistakes. Then finally the anesthesiologist came in. “I know this family!” she exclaimed…finally a familiar face, Dr. Pilar Castro. She was not his anesthesiologist for his first surgery however, she was the one who did his initial consult. One of the most caring souls I have ever met. We have a picture of her with Rowan as an infant. Suddenly our minds were somewhat at ease. Our little man was in good hands.

Next Dr. Traboulsi came into the room, another very familiar face. The infamous surgeon and ophthalmologist we have seen since Rowan was just five months old. Together they collaborated a game plan and things began to move so quickly from there. They decided intubating him would be the safest option given his extensive medical history. Then they decided on a “cocktail” of versed, nitrous, and propofol. They had me give him that syringe full of pink liquid (versed) to get things started and asked which one of us would be joining them in the OR. Ugh…this is one of those tough decisions parents should never have to make. First off, it’s something we both wanted to do yet didn’t want to do at all. All parents want to be there for their child in tough, scary times yet believe me…no parent wants to witness or experience that. Ultimately we decided I would go. So I suited up and followed the team down that long hallway to the OR clinging Rowan tight against my chest. We approached the room and his team headed in with the exception of his surgeon and the two of us. He tied the mask around my face and we followed behind.

This next part is hard to type because in order to write it, I must relive it. I laid him on the table surrounded by people. I did my best to mentally compartmentalize, something I’ve never been good at. I’m not a stranger to the OR. I mean, prior to Rowan I worked for three surgeons. Let me just tell you…it is sooo different when your child is the one on that table. The versed was finally starting to kick in, he was getting loopy. Next they started the nitrous mask. His face turned purple and I could see in his eyes he was scared and trying to fight it but his reflexes were slowly vanishing. It was paralyzing his ability to move. I quickly traded places with a child life specialist to be better positioned in his line of sight. I asked “Is this normal?” far too many times as I watched this all unfold. His chest retracting, his face turning colors, the inability to move…all very normal but so hard to witness. But I remained calm and collected knowing I needed to be Rowan’s rock in that moment–the calm to his storm. The anesthesiologist assured me he wouldn’t remember any of this with the versed so I was quick to ask for a dose as well. She laughed but my request was quickly denied. Now that the nitrous was taking effect it was time to find an IV site. They prepared me for the worst with the numbing agent. “This will be loud and it will sound like a rocket but it won’t hurt him,” she kept saying, but honestly that part was nothing–so much better than they made it out to be. First attempt failed…Rowan is and always has been a hard stick. Time for another rocket and another attempt. He was still trying to move and pull away but his body wouldn’t allow him to effectively at this point. As Dr. Castro tied off his arm to try another vein, a nurse (I assumed at the time) stumbled into the nurse anesthetist. ” Woah, be careful” she said…then it happened again. “Are you ok??,” she asked. Then almost in slow motion she replied “I feel funny…” as she fell right into her as well as the machine providing the nitrous. I fully understand things happen, I do. However in that moment I was beyond frustrated with this girl. Maybe she didn’t eat, maybe she couldn’t handle the site of a toddler on that table, maybe the bright lights of the OR just got to her. I later found out she was a student observing and I am fairly certain she should find a new field but I was thankful she didn’t do it five to ten minutes later when there was a scalpel to our son’s face. The child life specialists kept asking if I was ok as my eyes fixated on her going down. I was fine but she was not. His anesthesiologist was inserting the needle as this played out and thankfully despite this event, she was successful. His surgeon at this point was now tending to this student who was still disoriented. He then traded places with the anesthesiologist and I was assured she would be moved before they began. They were now ready to begin. I along with the two child life specialist exited the OR after Dr.Traboulsi thanked me for being involved. “Not too often do we get to experience having a parent in the OR, you did great…thank you. I will take good care of him, I promise.” Then out I went still composed right up until those doors closed behind me. Then I lost it…so many emotions came streaming down my face in that moment. Time to find Dereck and collect myself while the true waiting game began…

There he was in that empty PACU bay dealing with his own emotions (we will get to his point of view later). I unsuited, lost it all over again as I could see the tears welled up in Dereck’s eyes as well. Then we finally grabbed Rowan’s things and headed to the waiting room for what we hoped would just be forty-five minutes to an hour. Three cups of crappy coffee, endless pacing, and many rounds of connect four later I was starting to panic. It had been an hour and a half…what was taking so long?! Dereck tried to assure me this happened last time but that wasn’t comforting because the delay last time came from countless failed IV attempts…I was there for all that. I knew that wasn’t the hold up. Then the texts began to flood in…”Is he out yet, how did it go?!” The more time that passed, the more texts and calls we received–the more the panic started to grow. Maybe our pager was broken…that would make sense right?!…So Dereck disappeared to go check with the desk…not the case. At this point, two and a half hours had passed for what was supposed to be a forty-five minute procedure. Then finally we received a message on the pager that they were wrapping up and Dr. Traboulsi would be out soon to speak with us. Phew! We could finally breathe…for a moment anyways.

About fifteen more minutes passed and our night in white surgical scrubs came out from around the corner. He had half a smile which was a reassuring sign. “You’re smiling, does that mean good news?” I asked. “Let’s sit down somewhere…” a phrase no parent wants to hear in response. So we did. We found a corner of the waiting room and adjusted chairs to face him. “There were some complications…Rowan had far more scar tissue from the previous surgery than we anticipated. His anatomy inside the eye is also not that of a ‘typical’ child. I completed the procedure and everything was going great…then I went to burry the knots on both sides of the sling, and they wouldn’t stay tucked. I didn’t want to tug or keep trying so for the first time in thirty-five years I called in an oculoplastic surgeon to assist.” My curiosity peaked at this point as I was trying to take this all in, “Did it happen to be Dr. Hwang?”. Indeed it was…this is the surgeon we had originally requested in the beginning of our search but she did not typically deal with pediatrics so we were sent to Dr. Traboulsi and are so glad we found him. Though I was somehow comforted by the fact I knew she had an impressive resume. He went on to explain that she was able to burry the knots effectively and they closed him up. Another brief euphoric moment that was abrupt by the news that followed…”We won’t be able to do this procedure again”, he said. For those of you who don’t know, we have prepared ourselves for the fact that Rowan would need this procedure repeated several times throughout life due to the severity of his ptosis and his face constantly growing and changing shape. Now what?!?! He explained there is just too much scar tissue and hopefully this would hold for as long as possible. We would discuss other options down the line when we crossed that bridge. He went on to say that he pulled the sling as tight as possible this time to get an optimal lift. Though we wouldn’t know how effective it was until they removed the stitch in office at this follow up appointment the next morning (They stitch the eye shut overnight to allow it to begin to heal). Ok…so yes we had just gotten hit with a ton of bricks however, they successfully completed the procedure. “Can we see him then?!” is about all I could get out of my mouth in that moment. “They are waking him up now and will page you shortly.”

Fantastic news! However the minutes following that exchange kept adding up and still no page. I ran up the ramp to ask the lady at the desk a question about parking and my anxiety ramped back up in full force when I saw Dr. Traboulsi sitting with Dereck motioning for me to come back down. Never, ever a good sign…he explained that when they extubated Rowan his oxygen levels plummeted and they were having a hard time getting him to stabilize. There were a lot of scenarios that had played out in my head approaching this surgery and this certainly was not one of them. It’s amazing how quickly all of those major concerns I had fifteen minutes prior just vanished in the blink of an eye when we found out our little man wasn’t able to breathe on his own. I cannot even begin to effectively explain the emotions that came flooding over us in that moment, but I pray none of you reading ever have to experience them.

Another half an hour or so passed and we finally got the page that we could see him. We raced to his room where we found him laying in a crib, still completely knocked out and on eight liters of oxygen at that point. Definitely not our spunky little boy crying and ripping out cords like usual. The next five hours were filled with him very slowly coming out of the effects of anesthesia and weaning off of oxygen. It was emotionally draining. At one point, his nurse disappeared and came back with both arms full of snacks and drinks. She looked at me and said “Honey, I know you haven’t eaten today…I’ve got him for a moment. Eat, you’re shaking.” Those nurses are hard to find. Shortly after that we attempted room air but he continued to desat. We had already given him steroids but nothing seemed to be working for more than short stints. That’s when Dr. Castro came back in. She decided at that time he needed to be admitted (this was supposed to be a same day surgery–two to three hours in the PACU tops). The hospitalist then decided moments later that he needed to be followed by the PICU not just on a general nursing floor. Eventually he was given albuterol treatments which were our saving grace then we were transferred to the floor.

We spent the night in the ICU with very little sleep between his rounds every two hours and the incessant beeping of his oxygen monitor with constant desats…Not to mention the five leads of a heart monitor, BP cuff on one ankle, pulse ox on the opposite foot, IV in the arm complete with arm board and sock cover, and finally a patch over his eye. That’s enough to make any toddler lose their mind. Then we irritated him just a little more with a chest x-ray which thankfully ruled out infection in his lungs but this is Rowan we are talking about and as you all know there is always an incidental finding with any test of his…in this case it was an enlarged heart.

The next day we obviously missed his follow up appointment, but thankfully we received an early morning call from his surgeon. He offered to see him in the hospital after morning clinic to remove the stich holding his eye shut. Only problem was he ripped the patch off five times leading up to that happening. It was a very trying day but thankfully we were discharged that afternoon to finally come home. We still don’t know what caused his breathing complications or enlarged heart but we know his heart is now back down to normal size and he likely has a narrow airway as well as sleep apnea. However, all of the testing to follow up with these concerns have been cancelled until further notice due to COVID-19. This saga is far from finished but props to you if you have read this far. Another post will be coming soon so stay tuned.