May- the Month of the Airway

Written by Anna

Being back in the NICU was a relief. We were quickly comforted by the knowledge of the staff, the nurses' dedicated care, and the routines we had learned just over a month prior. Over the next week, Linus’s respiratory support was regularly increased, and he began to lose weight because he was working so hard to breathe. All of the NICU staff were walking on eggshells around Linus, because if he got upset and cried too hard, his vocal cords would suction together and obstruct his airway. After watching an upset Linus turn blue from a lack of oxygen, our doctors knew it was time to act, and our OT and craniofacial team members who knew Linus best helped guide us through conversations with ENTs to decide what the next best step was. Eventually, we settled on performing a cordotomy. Early in May, Linus was brought to the OR to have a portion of his vocal cord lasered off with the goal of opening his airway. This is not a permanent fix, as the missing portion of the vocal cord will grow back, but the hope is that by the time it does grow back Linus has grown enough that the paralyzed vocal cords are no longer problematic. 

The first 24 hours after the cordotomy were amazing. Linus looked and sounded more comfortable when breathing than he ever had before. He was doing so well that the following evening he was moved from the NICU to the care of our craniofacial team. Unfortunately, that night we spent in our new unit did not go well. I was woken up multiple times each hour by nurses, doctors, and respiratory therapists to listen and discuss Linus’s worsening breathing. About an hour after the dayshift team clocked in, an ENT was performing another bedside scope on Linus and calls were being made to the NICU, asking if a room could be prepared for us. We returned to the NICU that afternoon defeated, yet thankful for the support Linus could receive there. 

We spent our first days back in the NICU trying to find a level of respiratory support that kept Linus comfortable and encouraged appropriate growth and development. Almost daily we were increasing his level of high flow until we maxed out the support he could receive from it and had to transfer over to CPAP. We gradually had to increase his CPAP support, and we soon found ourselves at the highest level of CPAP Linus could receive. Our next step was to either intubate him or send him back to the OR for another surgical intervention. 

While all of this was happening, Linus was frequently discussed amongst the hospital’s ENTs who were debating what the next step should be. We were informed that our son’s condition was worsening because the portion of his vocal cord that was removed during his previous operation had already regrown. Various ENTs would come by our NICU room to discuss our options, and the consensus amongst almost all team members was that Linus needed to have a tracheostomy. This was far from the answer we had hoped to hear, so Zach and I desperately asked if there was any surgeon on the team who felt like we had another option. The next day we met with a new doctor who walked through an alternative surgery that he hoped- but wasn’t certain- would successfully expand Linus’s airway. He offered to split the ring of cartilage around the vocal cords in half and insert a graft of cartilage from Linus’s ribcage to widen it. He had performed this many times on older patients, but to attempt this on a two month old was unheard of. Zach and I agreed to the surgery, praying that we could avoid having a baby with a tracheostomy. 

Getting this surgery scheduled was difficult. We signed the surgical consent forms on a Friday, meaning that we would have to wait until the following week to get an OR reserved. Our surgeon tried to convince the OR schedulers that this case was an emergency since Linus was officially on the maximum level of respiratory support he could receive without being intubated, but we were forced to wait until the next week for the surgery. Thankfully, Linus’s respiratory support did not need to escalate over the weekend. 

The weekend passed quickly and next thing we knew our son was once again being wheeled off to the OR. We were told that the surgery was expected to take four hours, so Zach and I left the hospital and decided to do some shopping to pass the time. About one hour after entering the OR, I received the phone call that Linus was being brought back to his NICU room and that we should come back to the hospital. We quickly returned, confused and nervous by this change of plans, but were quickly calmed by the ENTs who greeted us with our son. The surgery we agreed to was never performed because it thankfully didn’t need to be done. While everyone had thought that Linus’s vocal cord had regrown, it hadn’t. Instead there was an excessive amount of swelling at the previous surgical site that was narrowing the airway. Our surgeon had applied steroids to this tissue both topically and through injections, he stretched the airway open as best as he could, and he inserted a breathing tube hoping that it would prop the vocal cords open. Linus was to remain intubated for a week and then be taken back into the OR to check his progress. Everything happened according to plan, and with the help of a lot of steroids, Linus was extubated just over a week later. He was placed back on CPAP, but quickly worked his way off all forms of respiratory support in a couple short weeks. This truly was a miracle.