While Ian was being resuscitated, I spoke to the neonatology fellow who showed me his impressive abdominal x-ray showing the free air. He told me he was also the one who placed all the lines, intubated Ian, and started the boluses. Ian ended up getting around 200 cc/kg of normal saline. He just happened to be walking by Ian as he arrived when he noticed that he looked very bad. The surgery team who was supposed to see him was busy with another sick patient at that time. So if the NICU fellow wasn’t there at that time, Ian could have been hypotensive for much longer, risking ischemia to the brain. It wasn’t until later that I realized that he literally saved Ian’s life. It wasn’t until days later that I was able to thank him. “That’s what we’re here for,” was his reply. I will forever be grateful to him. Oh, he also happened to be Filipino.
The anesthesiology team came up and I spoke with the resident briefly. I’m sure he was very capable, but his appearance looked sloppy and I couldn’t resist presuming that it was also a reflection of his medical care. It was at that moment that I wished I were back in Loma Linda where people I knew and trusted would be taking care of my son. But I thought, God sent Ian here for a reason.
Just before they were about to take Ian down to the OR, Aileen arrived with the rest of her family. I must have looked very worried because Aileen immediately grabbed me and hugged me. We followed the peds surgery fellow down to the OR and she told us to wait in the surgery waiting room. My parents arrived shortly after and we were the only ones in the waiting room that evening. I got a call from
In the waiting room, our family got down on our knees and prayed. I was hoping that floods of Bible promises would come to mind at this time, but to be honest, my mind was numb. I felt like I was grasping for some handholds but could not find any. But before I started to fall, my family reminded me of the promises found in Psalm 121 and James 1:2-4.
As we waited for the case to finish, I looked at the pictures of Ian that we had taken before he had gotten sick. They gave me hope that one day, Ian would be restored to health again. But in the back of my mind, I wondered if he would ever be the same again. I was hoping that the surgeons would find a simple intestinal atresia, resect it and put him back together. But I also feared that he may have malrotation and volvulus which would require all of his intestines to be resected and necessitate the need for long term TPN (IV nutrition).
After about two hours, the surgeon walked into the waiting room. He was tall, young, and had a pleasant smile. It gave me hope that what he found was not too bad. But after introductions were made, he sat us down and said, “The surgery went well, but he’s gonna be sick for quite a long time.” My heart sank. “It’d be easiest if I drew you a picture of what is going on,” he said. At that moment, I thought for sure he was going to draw the picture of malrotation that I’ve seen so many times in my surgery textbooks. But instead, he said the upper intestines looked normal. I was so relieved! However, he found hard meconium obstructing the distal ileum with the perforation just proximal to the meconium plug. Proximal to the obstruction was what he described as thickened, dilated, and angry looking bowel which he left in and hoped would heal in time. The colon was small and it appeared that nothing really ever made it that far in the intestinal tract as everything was blocked by the meconium.
He was able to resect a small portion of the perforated bowel and due to the inflammation and infection from the perforation, he had to create an ileostomy, which he said he was planning on taking down in 6 to 8 weeks after the inflammation and scar tissue had cleared. They also placed a central line so that Ian could start getting TPN. That meant they were not expecting Ian to be eating anytime soon. My heart sank again.
But the other issue that needed to be addressed was why the meconium was so thick in the first place. This was a case of meconium ileus, which he had explained was associated with cystic fibrosis. My heart sank even lower. Although CF is extremely rare in Asians, he was going to send a genetic panel to test Ian for the disease. I had just watched a TV show about a man whose children had CF back in the 1970s and none of them lived past 40 years old. I pictured Aileen and I doing vigorous CPT, pounding on Ian’s back, in the middle of the night to try to break up the thick secretions in his lungs. I couldn’t bear to see Aileen or Ian having to go through that.
The surgeon gave us the picture that he drew and scribbled his phone number on it. He said we could go up to see Ian in a few minutes and wished us goodnight. The news he brought us was not what any of us had expected. But he left us with a sense of hope, and we all clung to that piece of hope as tightly as we could. Although the miracle I was praying for did not transpire that night, I was left with a sense that Ian was in good hands. But another miracle was taking place. I looked around me and felt a closeness to my family that I’ve never felt before. It felt like Ian, Aileen, and I were in the middle of a giant vacuum, but God was pulling in all our family and friends towards us like never before.
We went up to see Ian. He looked peaceful, thanks to the fentanyl, morphine and versed. But he looked so fragile. His life depended on the ventilator he was connected to and the numerous drips hanging beside him. But he was alive. I saw the tiny ostomies on his belly and knew that this would be a long road before we would experience any semblance of a “normal” life. I think we were all too tired to cry. We entrusted Ian to the care of the NICU nurses and physicians, and we drove home to try to get some rest.
But there was no rest for Aileen, who had just delivered Ian less that two days earlier and was only able to sleep 4 hours in the last three days. She had to start pumping breast milk every three hours. But the combination of the adrenaline and the maternal drive kept her going. She has pumped diligently with the hope that one day, Ian would be able to eat. I don’t know how she does it, but a mother’s love is truly an amazing thing. Just thinking about it moves me to tears.