Lucas Camilo

Yesterday Lucas had surgery on his eyes — a special procedure called a Tarsorrhaphy which essentially involves sewing the upper and lower eyelids together at the outer corners. While he was under anesthesia they also removed a bunch of his long eyelashes through cryosurgery.

Icing the eyes post-surgery

The good news is that 24 hours later he is resting and recovering well. He still looks like a boxer who got his butt kicked… his eyes are partly swollen shut and there’s bruising, especially on the left eye. But the initial pain coming out of the surgery — which was intense for Lucas — is long gone, and he’s fine laying on the couch listening to his favorite 70s rock playlist.

So why did he need this surgery? One of the effects of myotubular myopathy is that Lucas can’t blink much, not nearly enough to close his eyes. His eyes remain partially open when he sleeps, and his eyeballs don’t roll back and up (called Bell’s reflex) when his eyes are closed, a mechanism which helps moisten the eyes. All of this means his eyes get extremely dry and irritated, and some scar tissue has formed on the surface. Ophthalmologists have warned that the dryness and scaring could lead to infection and, if not treated, partial or total blindness.

We’ve tried lots of things (eye drops/ointment/gel, taping his eyes closed at night, a humidifier in his room, dampness goggles that keep eyes moist at night, and more). But the lower part of his eyes was still getting dry.

So they recommended the Tarsorrhaphy procedure–  stitches on the outer edge of the eyelids that will bring up the lower eyelid and (hopefully) prevent extreme dryness. The decision took some time to make; surgery is never easy as there is always the possibility of complications, plus there’s no guarantee that it will solve the problem. But in the grand scheme of Lucas’s health issues it’s a relatively minor procedure, and if it doesn’t work for some reason, it’s reversible.

Lucas has had 4 or 5 previous surgeries for various different things, so the routine is not new for us. But the last time was more than 3 years ago so he doesn’t really remember, and this time he was much more involved, asking questions all along the way. He grilled the anesthesiologist during the pre-op appointment the week before, and because he seemed to feel satisfied with the answers, he wasn’t that nervous going into the big day.

On Friday morning we had to show up at Harborview (not Children’s Hospital, where Lucas usually goes) at 6 am to get checked in. The anesthesiologist was great, allowing me to accompany Lucas into the operating room and make sure that he was comfortable and properly switched over from his travel ventilator to the hospital one. In a previous conversation with the surgeon Lucas had told him about his love of hard rock music… so there was talk of blasting Ozzy Osbourne over the OR speakers. But Lucas decided that might be hard to fall asleep to, so one of the nurses found some classical versions of rock songs. Lucas was still joking with the doctors and trying to “name that tune” as the gas started flowing, and pretty soon he let out a big yawn and was out cold. That’s when I left the room.

An hour later he came out to post-op where Krista and I were waiting. He woke up immediately and was in a lot of pain. It was definitely the hardest part of the whole experience… he cried and demanded that we put drops in his eyes (which was impossible) for what seemed like forever (actually maybe 10 minutes) while the nurses rushed to get a hearty dose of fentanyl into his IV. Finally he calmed down, we put on a good Spotify playlist, and the recovery began. An hour or so later we were getting him back up into his wheelchair, and rolling out of Harborview with a towel draped over his face. We joked that he looked like a zombie and he started making zombie sounds as we traversed the tunnels on the way back to the van. Then he threw on some oversized sunglassed for the ride, and by noon we were home and resting more.

It wasn’t until about 6 or 7 pm that he could actually see enough out of one of his eyes to watch his favorite David Attenborough nature special on Netflix. Today things continue to look up and we are cautiously optimistic that the procedure will ultimately be successful in preventing extreme dryness without limiting his vision in the short-term. We’ll keep you posted.