Even as I was looking for some good news, I was being told that the doctors at this hospital did not have experience in handling this problem. They were struck too. They said these sort of cases were really rare and there might be very few surgeons in our country with experience in this field. And, this was one of the best hospitals in my country and in fact the best one in my city. But yes, they were being honest and supportive. They felt bad about the way things were shaping up. I could see them wanting to help us with some sort of information. The head of the Pediatric Intensive Care promised us that she would do a research on this and get back us with more information. I wasn't sure how long would this be taking and would I have to keep reminding them about this.
I was totally confused. I did not understand a lot of things. That night I called a distant relative of mine who happens to be a pediatrician. Only after speaking to her, I was really beginning to understand the problem. Even she told us that it would be a better idea to wait for 6 more months and these type of surgeries were rare in our country. That there were about 3 different surgical approaches to rectify Subglottic Stenosis but just one or two types of procedures are practiced in India. She also said that there still exists a slight chance that it could heal on its own in this 6 months.
The very next day, the head of the pediatric intensive care came to my son's room and informed us that she had made a few phone calls the previous evening and gave the details about a surgeon in the neighbouring state who specialised in these kind of surgeries. She had even spoken to the surgeon about my son's problem and he said the success of the surgery depended upon the location of the stenosis. And that he could not comment without having the details about the size of stenosis. He has also informed that we could qualify for some financial aid for the surgery since a surgery might mean a prolonged stay and expenses in the hospital.
So, yesterday morning we have emailed the surgeon describing my son's problems. We are eagerly waiting for his reply.
As of now, we do not even know the next step. such as what is the test that needs to be conducted to get further details about the subglottic stenosis or what is the probability that the narrowing could heal on its own. It is frustrating to feel so helpless and sit without knowing what to do next. Hope the doctor responds to the email soon.
In the meantime, I have started exercises for my son. I put him on his tummy and with some help from my end, he is able to hold his head up for a while. I have also started my research and trying to post questions in different forums across the world. Even as I wait for answers, I'm hoping that the stenosis is cured on its own without a surgery. After all, Miracles can happen to anyone, at any time. Hope its our turn now.