On November 26th we met Dr. Cochrane at BC Children’s Hospital in Vancouver. We were very nervous and after what Dr. Fearon had wrote to us, we kind of knew what to expect. Our first impression of Dr. Cochrane was very good. He explained to us what this condition is and everything and then gently felt Nikhil’s head with his hands. He said a metopic ridge doesn’t always end up in a surgery and advised that we wait and observe his head growth. He did have metopic cranio but his suggestion was to not rush into a surgery and to wait another 3 months and see how is he growing. He was young enough that we could wait. At 9 months he would evaluate him again and decide what's best for him then.
After the appointment, I didn’t know what to feel. We didn’t get a definite answer as in a Yes or a No. It was like we are in a limbo; waiting another 3 months to see how his head would grow. And what do we do till then? I would keep staring at his head every day. I was so obsessed that whenever I saw someone's baby, I would stare at their head. After 3 months I could easily identify small defects in different head shapes. No, seriously!
After the appointment, I didn’t know what to feel. We didn’t get a definite answer as in a Yes or a No. It was like we are in a limbo; waiting another 3 months to see how his head would grow. And what do we do till then? I would keep staring at his head every day. I was so obsessed that whenever I saw someone's baby, I would stare at their head. After 3 months I could easily identify small defects in different head shapes. No, seriously!
Our First Home...
December 2012 was special. We had briefly seen a condo in the same building as our friends and had liked it. Although we were not really looking to buy our first home, because of nikhils health and other family issues, we were keen in moving from our current place. Nothing was wrong with our apartment, but subconsciously I think it was a way to make us feel that once we move to the new place our worries will be over. It did prove to be a good distraction for another month. The packing, unpacking, moving, organizing and settling was fun. stressful but fun.
RSV... The nasty virus
The winter of 2012 was horrible. worse than the usual winter. Kids across Vancouver were falling sick and getting flu all winter and our kids were no exception. It usually started with Neil because of his daycare, and Nikhil would quickly follow in a day or two. Its hard to make a toddler understand about hygiene. Very often he would just sneeze or cough right on Nikhils face and would think its funny.
Sometime in mid February, Nikhil got sick. We thought it was the usual viral infection again and started the Tylenol and Humidifier routine. The only other thing I noticed was a “wheezing” sound from his chest. That was different this time. His temperature was around 101 all the time and that was concerning. We took him to the doctor and as expected were told to wait for 3-4 days and see if the viral goes away on its own. That night Nikhil didn’t look good. I just knew something was wrong. He had lot of sticky stubborn mucus which is a little unusual for common cold. He was trying hard to breathe and just couldn’t sleep. Eventually some time in the night he fell asleep for a couple of hours, reclined on a pillow. I didn’t realize it then, but the raised surface was helping him take in more oxygen. It was a very tough night to go through. We decided to take him to the doc first thing in the morning. When we saw the doctor, she told us to take him to ER right away. She suspected bronchiolitis or pneumonia.
By the time we were moved to an ER checkup room, he was getting very uncomfortable, coughing and grunting. He had contracted RSV - Respiratory Syncytial Virus. Although most kids are exposed to this virus by their second birthday, only in a few cases it gets so serious that the child has to be hospitalized. We were in the hospital for 5 days. He was given oxygen and meds through an IV drip. The hardest part was to keep him well entertained. Due to an extremely contagious viral condition, we could not take him out of his room even in the hallway, for 5 days. He was literally confined to his bed all the time because of the tubes attached to him. With no other help available, Salil and I took turns staying in the hospital. One parent always had to be at home with Neil, my toddler.
We also started using puffers to lessen the airway inflammation & were told to continue using them at the first sign of wheezing or coughing in future. He was a happy kid when we came home on day 5. It was as if he was released from prison!
Sometime in mid February, Nikhil got sick. We thought it was the usual viral infection again and started the Tylenol and Humidifier routine. The only other thing I noticed was a “wheezing” sound from his chest. That was different this time. His temperature was around 101 all the time and that was concerning. We took him to the doctor and as expected were told to wait for 3-4 days and see if the viral goes away on its own. That night Nikhil didn’t look good. I just knew something was wrong. He had lot of sticky stubborn mucus which is a little unusual for common cold. He was trying hard to breathe and just couldn’t sleep. Eventually some time in the night he fell asleep for a couple of hours, reclined on a pillow. I didn’t realize it then, but the raised surface was helping him take in more oxygen. It was a very tough night to go through. We decided to take him to the doc first thing in the morning. When we saw the doctor, she told us to take him to ER right away. She suspected bronchiolitis or pneumonia.
By the time we were moved to an ER checkup room, he was getting very uncomfortable, coughing and grunting. He had contracted RSV - Respiratory Syncytial Virus. Although most kids are exposed to this virus by their second birthday, only in a few cases it gets so serious that the child has to be hospitalized. We were in the hospital for 5 days. He was given oxygen and meds through an IV drip. The hardest part was to keep him well entertained. Due to an extremely contagious viral condition, we could not take him out of his room even in the hallway, for 5 days. He was literally confined to his bed all the time because of the tubes attached to him. With no other help available, Salil and I took turns staying in the hospital. One parent always had to be at home with Neil, my toddler.
We also started using puffers to lessen the airway inflammation & were told to continue using them at the first sign of wheezing or coughing in future. He was a happy kid when we came home on day 5. It was as if he was released from prison!
The 9 month followup...
We met Dr. Cochrane as he had suggested when Nikhil was just 5 months. This was the turning point for us and we knew that whatever he says today we, most likely will proceed with that. Metopic Craniosynostosis amongst all of them is a tougher one to decide, because every doctor's opinion can vary. Doctors always say (although parents disagree), a childs development won’t be affected with or without surgery and thats what makes it so difficult to decide.
In a very calm voice he advised us to go ahead with the surgery when he turned one. According to him, although his condition won’t affect the brain growth, it will have a major impact on how he looks and feels about himself. He also explained how its not a cosmetic surgery but a reconstructive surgery. Cosmetic surgery is for people who look fine but are changing something on their bodies to make them look better. A reconstructive surgery is to fix something not quite right to make a person look better...or just making them look “normal” - as what the society perceives normal to be.
I don’t recollect exactly what happened next but I think Salil asked him a lot of questions and I was completely numb. I think I didn’t speak because I didn’t want to cry in front of him.
After meeting Cochrane there was really no doubt in our mind whether we should be taking a second opinion from Dr. Fearon in Dallas. We planned a trip to Texas but eventually just decided to visit my brother in Houston and skip Dallas totally. We trusted Cochrane completely and in our hearts knew that a surgery was the right thing to do.
(Story continues on: 03_surgery scheduled)
In a very calm voice he advised us to go ahead with the surgery when he turned one. According to him, although his condition won’t affect the brain growth, it will have a major impact on how he looks and feels about himself. He also explained how its not a cosmetic surgery but a reconstructive surgery. Cosmetic surgery is for people who look fine but are changing something on their bodies to make them look better. A reconstructive surgery is to fix something not quite right to make a person look better...or just making them look “normal” - as what the society perceives normal to be.
I don’t recollect exactly what happened next but I think Salil asked him a lot of questions and I was completely numb. I think I didn’t speak because I didn’t want to cry in front of him.
After meeting Cochrane there was really no doubt in our mind whether we should be taking a second opinion from Dr. Fearon in Dallas. We planned a trip to Texas but eventually just decided to visit my brother in Houston and skip Dallas totally. We trusted Cochrane completely and in our hearts knew that a surgery was the right thing to do.
(Story continues on: 03_surgery scheduled)