I'm not going to sugar-coat it. Today was extremely difficult. It was one of the hardest days for us since Silas was born.Silas came back from surgery last night with a breathing tube down his throat and much of his face hidden by the tape that held the tube in place, and his eyes and face were swollen. He gradually opened his eyes and began to look around and was clearly uncomfortable and frustrated because he couldn't move with all of the probes and monitors on him. Several times his eyes welled up with tears and he cried inaudibly as he gradually regained consciousness.
After much deliberation and observation, Silas was eventually extubated at around 2am and given oxygen. His voice was weakened by the breathing tube, but he stabilized fairly quickly and seemed relieved to be breathing on his own again. He slept intermittantly for a few hours while monitors and alarms chimed all around him.
In the morning the really difficult part began. We were told the first two days of recovery would be the most challenging, but we had no idea now bad it would get. Silas was visibly uncomfortable when he awoke before 7am. One of his doctors explained that he is experiencing three very serious types of pain all at once. Any one of these would be enough to make someone miserable. They can relieve his pain with medication to a certain extent, but too much pain relief will cause his vocal cords to collapse and will obstruct his breathing, so there is going to be a few days of discomfort no matter what.
By 9am some combination of stress, medications, pain, neurology and/or fear sent Silas into an uninterrupted eight-hour bout of stridorous gasping. Nothing seemed to help. His chest sunk in frighteningly deep with each gasp, but he seemed unable to catch his breath. Everyone did their best to help: pediatricians, pulmonologists, cardiologists, respiratory therapists, nurses, but he seemed inconsolable. He had x-rays of his chest, an ultrasound of his heart, and assortment of medications, several settings of oxygen, and numerous labs. Still the gasping persisted. All of his energy was spent on trying to breathe -- he couldn't move his legs or even make eye contact. His breathing was so bad that he ended up needing a feeding tube.
His symptoms are not uncommon after this surgery, we were told. As the brain is adjusting to the surgery, the body is absorbing new medications, the trachea is recovering from the breathing tube, and the muscles of the neck recovering from the surgery, the body can take a while to reach an equilibrium with independent breathing. We had no idea the process would take all day. The strategy of the team here was to work with Silas by providing oxygen and medications but to not intubate him again unless absolutely necessary. By late afternoon, the doctors ordered up an oxygen mask that would help equalize the pressure in his lungs and vocal cords. Thankfully, we did not have to use it.
In between doctors' visits when the room was quiet, Aunt Michelle, who came up the night before, dimmed the lights, held both of Silas's hands, got up right beside his ear, and started singing quietly to him. After a while, Silas finally caught his breath, started to breathe deeply and slowly, and eventually drifted off to sleep. Since then we've taken turns holding his hands and he has been sleeping peacefully all evening. He occasionally opens his eyes wide to look around the room but then calmly nods off to sleep again. It's an amazing transformation. We still don't know what combination of factors finally broke his cycle of gasping. I like to think it was my sister's sweet and soothing manner that finally gave Silas peace and confidence that everything was going to be OK. We were so worried about him all day today and felt completely helpless the whole time as we watched him struggle. The day was among the most nerve-racking we've endured so far. We are so thankful Michelle was here and that Silas is breathing normally again now.
Tonight we are exhausted. Tomorrow is supposed to be the last really hard day of recovery. We're going to try to get some rest so we're ready for it. His hospital recovery will take several more days, and his symptoms like stridor may take several weeks or even months to finally go away as his cranial nerves gradually repair themselves. Thanks everyone for your continued prayer as Silas recovers from this major surgery. He now appears to be doing really well.
