Nikhil had been fasting since the previous night. I was concerned how he was going to get through the fasting phase but my boy did super ! He took his last feed at midnight and didn’t demand for anything through the night and even in the morning. We had to reach the hospital by 6.30am. I wanted my mom there and someone had to be with Neil, so Salil and dad stayed back.
We reached early but Nikhil was doing well. He was surprisingly playful & smiling given the fact that he hadn’t had milk or breakfast since he had woken up. We took a few snaps before we went to the surgical department.
We reached early but Nikhil was doing well. He was surprisingly playful & smiling given the fact that he hadn’t had milk or breakfast since he had woken up. We took a few snaps before we went to the surgical department.
At 6.30 am we went in. After some paperwork, Nikhil was weighed, dressed and was given some Tylenol. I think he was hungry at that point and wanted some more! it tasted yummy. Then we walked to a big waiting room where we saw other parents with their babies and kids getting ready for their respective surgeries. All of us had the same feeling I guess. The fear, anxiety and the feeling of being so helpless.
I waited there with my mom and Nikhil in my arms. I didn’t want to let him go. After some time I saw Dr. Cochrane in his scrubs. He came to say hello and I remember holding his hand and saying please take care of him, and then there was a knot in my throat. I couldn’t speak any further. After he left, a nurse came and asked me whether I would like to accompany Nikhil to the OT till they put him to sleep. I agreed because I wanted those extra 2 minutes with him and I also wanted to see if the anesthesia would be painless. I put the scrubs on and it was time to go. My mom was teary eyed but gave me a look and told me to be brave. After a few kisses, we were off to the OT area.
After I went in the room, I tried hard not to look at the tools and the masked people. I think the anesthesiologist saw how terrified I was and assured me he would be in safe hands. I kissed Nikhil and gently lay him down on the table. Then he covered his face with a mask and put him to sleep. Nikhil gave out a tiny cry and within 3-4 seconds he just fell limp on the table. There was no motion. That was so so so horrible !! With tears flowing, I murmured keep him safe and just ran out of that room! This was the hardest thing I have done as a mother. I felt very guilty at that moment. I can't explain what it feels like when you have to wait outside knowing that your baby's life is in someone elses hands.
The surgery was going to take 5-6 hours. After an hour of just staring into space, we made a few phone calls to family. The doctors had said that we would get an update around noon. With still an hour to go, at 11 am we decided to head out to the cafeteria in the adjacent building. We were looking for some distraction and cafe seemed like a good choice. We found our way to the cafe through numerous hallways and departments. Just then I got a call from Cochrane. He wanted to see me right away. He even tried contacting Salil who was on his way to the hospital. After hearing this, my heart just stopped. Like a crazy woman, I started running and finding my way back to the surgical department. All the bad thoughts flooded my mind and all I could see was Nikhil’s face.
Once there, I saw Dr. Cochrane waiting for us. For a moment I remember staring at him as if I wanted to read his expressions rather than listen to what he had to say. He took us to a small room and in his usual calm demeanor said that the surgery had to be aborted but Nikhil was ok. Nikhil is just fine ! They had made an incision but had not removed the skull plates when his Hemoglobin dropped suddenly. They decided to err on the side of caution and not proceed with the operation. They stitched him back up and moved him to the recovery room where he was being monitored closely.
I didn’t know what to say. I just kept staring at him. Was there some other problem with Nikhil that his hemo would drop abnormally? What if they had given him a transfusion and went ahead with the surgery. What would have happened? Should I be thankful to these doctors to not proceed? Or is this a lack of judgement on their part? Didn’t they know hemoglobin could drop due to blood loss. My head was flooding with questions but I just sat there dumbfounded not knowing what to say. I just wanted Salil to come tackle all these questions and I wanted to run to where Nikhil was. Dr. Courtemanche walked in and assured us that he was fine and he hadn’t even touched his skull. According to him, this was a “minor hurdle” on the way and will be investigated further. How can this be a minor hurdle !! I was too upset and preoccupied to be mad at him for saying that. I just wanted to curl up in my bed and cry.
They were going to talk to us again after Salil arrived. We walked into the lobby and I saw dad. Salil was parking the car. I looked at him but couldn’t speak. I remember running to Salil when I saw him. We hugged each other and cried. We had not expected this. After 3 hrs into his surgery, they had to abort it and we were back to where it all started; and my poor baby had a huge incision on his head and scared.
We went back into that room with just Dr. Cochrane this time. He was extremely patient with our concerns. He himself could not understand the sudden drop in hemoglobin levels and was going to look into it. He had not seen this happen in the the last 20 yrs of his career. He wanted to check Nikhil’s blood again to rule out any abnormalities. Despite the given circumstances, he was of the opinion that the surgery was essential for Nikhil.
A nurse took me to the recovery room where Nikhil was being closely monitored. It was a huge hall with beds lined up and separated with curtains. At the far end of the room was my Nikhil. One look at him and I started bawling. I could not control myself. The guilt was back and this time even more intense. My legs became so weak that I literally collapsed on a chair nearby. His head was shaved a little and it looked bloody. The incision was literally ear to ear and zig zag. He looked very weak and had IV tubes attached to his tiny hands. He was on pain medication and was very groggy. The nurse kept assuring me that he was not in pain because of the medication and he should be fine in a couple of days given the fact that only an incision was made. But I just kept on crying. It was as if I had lost all the energy to fight. I have never felt so miserable in my life. This was the lowest point of my life. May 2nd 2013 is officially going down as the worst day ever!!!
I waited there with my mom and Nikhil in my arms. I didn’t want to let him go. After some time I saw Dr. Cochrane in his scrubs. He came to say hello and I remember holding his hand and saying please take care of him, and then there was a knot in my throat. I couldn’t speak any further. After he left, a nurse came and asked me whether I would like to accompany Nikhil to the OT till they put him to sleep. I agreed because I wanted those extra 2 minutes with him and I also wanted to see if the anesthesia would be painless. I put the scrubs on and it was time to go. My mom was teary eyed but gave me a look and told me to be brave. After a few kisses, we were off to the OT area.
After I went in the room, I tried hard not to look at the tools and the masked people. I think the anesthesiologist saw how terrified I was and assured me he would be in safe hands. I kissed Nikhil and gently lay him down on the table. Then he covered his face with a mask and put him to sleep. Nikhil gave out a tiny cry and within 3-4 seconds he just fell limp on the table. There was no motion. That was so so so horrible !! With tears flowing, I murmured keep him safe and just ran out of that room! This was the hardest thing I have done as a mother. I felt very guilty at that moment. I can't explain what it feels like when you have to wait outside knowing that your baby's life is in someone elses hands.
The surgery was going to take 5-6 hours. After an hour of just staring into space, we made a few phone calls to family. The doctors had said that we would get an update around noon. With still an hour to go, at 11 am we decided to head out to the cafeteria in the adjacent building. We were looking for some distraction and cafe seemed like a good choice. We found our way to the cafe through numerous hallways and departments. Just then I got a call from Cochrane. He wanted to see me right away. He even tried contacting Salil who was on his way to the hospital. After hearing this, my heart just stopped. Like a crazy woman, I started running and finding my way back to the surgical department. All the bad thoughts flooded my mind and all I could see was Nikhil’s face.
Once there, I saw Dr. Cochrane waiting for us. For a moment I remember staring at him as if I wanted to read his expressions rather than listen to what he had to say. He took us to a small room and in his usual calm demeanor said that the surgery had to be aborted but Nikhil was ok. Nikhil is just fine ! They had made an incision but had not removed the skull plates when his Hemoglobin dropped suddenly. They decided to err on the side of caution and not proceed with the operation. They stitched him back up and moved him to the recovery room where he was being monitored closely.
I didn’t know what to say. I just kept staring at him. Was there some other problem with Nikhil that his hemo would drop abnormally? What if they had given him a transfusion and went ahead with the surgery. What would have happened? Should I be thankful to these doctors to not proceed? Or is this a lack of judgement on their part? Didn’t they know hemoglobin could drop due to blood loss. My head was flooding with questions but I just sat there dumbfounded not knowing what to say. I just wanted Salil to come tackle all these questions and I wanted to run to where Nikhil was. Dr. Courtemanche walked in and assured us that he was fine and he hadn’t even touched his skull. According to him, this was a “minor hurdle” on the way and will be investigated further. How can this be a minor hurdle !! I was too upset and preoccupied to be mad at him for saying that. I just wanted to curl up in my bed and cry.
They were going to talk to us again after Salil arrived. We walked into the lobby and I saw dad. Salil was parking the car. I looked at him but couldn’t speak. I remember running to Salil when I saw him. We hugged each other and cried. We had not expected this. After 3 hrs into his surgery, they had to abort it and we were back to where it all started; and my poor baby had a huge incision on his head and scared.
We went back into that room with just Dr. Cochrane this time. He was extremely patient with our concerns. He himself could not understand the sudden drop in hemoglobin levels and was going to look into it. He had not seen this happen in the the last 20 yrs of his career. He wanted to check Nikhil’s blood again to rule out any abnormalities. Despite the given circumstances, he was of the opinion that the surgery was essential for Nikhil.
A nurse took me to the recovery room where Nikhil was being closely monitored. It was a huge hall with beds lined up and separated with curtains. At the far end of the room was my Nikhil. One look at him and I started bawling. I could not control myself. The guilt was back and this time even more intense. My legs became so weak that I literally collapsed on a chair nearby. His head was shaved a little and it looked bloody. The incision was literally ear to ear and zig zag. He looked very weak and had IV tubes attached to his tiny hands. He was on pain medication and was very groggy. The nurse kept assuring me that he was not in pain because of the medication and he should be fine in a couple of days given the fact that only an incision was made. But I just kept on crying. It was as if I had lost all the energy to fight. I have never felt so miserable in my life. This was the lowest point of my life. May 2nd 2013 is officially going down as the worst day ever!!!
Nikhil was moved to a shared room in the Neurosurgery ward. The nurse said that he would most likely be discharged in 24-48 hrs. He was sedated but waking up occasionally and we would give him some sugar water. Four of us just stood by his bed staring at him not wanting to speak anything.
In the evening, Salil's cousins came to see Nikhil and they were kind enough to get some homemade sandwiches and tea. I am so grateful to our family & friends here in Vancouver. None of us were really in a mood to eat but those sandwiches really helped us get through the day without leaving Nikhil's side even for a minute.
By late evening he was up and alert and was crying all the time. I think he was scared and probably in some pain. I just thought he was mad at me for making him go through this. All for nothing. We had a hard time controlling him. He was getting aggressive and at times it was hard to hold him, given the IV lines. Just then a guy walked in wanting to get his blood work done. The doctor had mentioned earlier that they would check his blood for any abnormalities or defects and this had to be done before we were discharged. The guy kept trying but just couldn't get it right. Nikhil was literally screaming this time. I tried to be patient and held him tightly but after his 3rd attempt, I lost it. It was too much to take. I told him to step away and get someone more experienced who could get it in one shot. (This is one complaint I have against the staff at BCH. I don't know if this is common, but it should not be so difficult to draw blood for someone who is trained for this job.)
After Nikhil calmed down, I went hysterical. I didn't want to proceed with the surgery now. Not after all this. I did not want him to go through this nightmare again and was fine the way he was. It was my fault and was going to regret it for the rest of my life. I remember mom tried to calm me down and kept telling me to let this time pass so we could think clearly again. But I had made up my mind and I knew Salil had too.
In the evening, Salil's cousins came to see Nikhil and they were kind enough to get some homemade sandwiches and tea. I am so grateful to our family & friends here in Vancouver. None of us were really in a mood to eat but those sandwiches really helped us get through the day without leaving Nikhil's side even for a minute.
By late evening he was up and alert and was crying all the time. I think he was scared and probably in some pain. I just thought he was mad at me for making him go through this. All for nothing. We had a hard time controlling him. He was getting aggressive and at times it was hard to hold him, given the IV lines. Just then a guy walked in wanting to get his blood work done. The doctor had mentioned earlier that they would check his blood for any abnormalities or defects and this had to be done before we were discharged. The guy kept trying but just couldn't get it right. Nikhil was literally screaming this time. I tried to be patient and held him tightly but after his 3rd attempt, I lost it. It was too much to take. I told him to step away and get someone more experienced who could get it in one shot. (This is one complaint I have against the staff at BCH. I don't know if this is common, but it should not be so difficult to draw blood for someone who is trained for this job.)
After Nikhil calmed down, I went hysterical. I didn't want to proceed with the surgery now. Not after all this. I did not want him to go through this nightmare again and was fine the way he was. It was my fault and was going to regret it for the rest of my life. I remember mom tried to calm me down and kept telling me to let this time pass so we could think clearly again. But I had made up my mind and I knew Salil had too.
Day 2: Nikhil looked much better. We were to meet with the Hematologist the following day, but for the time being we could go home and not think about anything. Nikhil was especially happy when we brought him home. He flashed a big smile and was happy to see his grandpa. Nikhil's first birthday was coming up in 4 days. Earlier, I had thought his surgery would have gone alright and we would get discharged a day before his birthday. Now, instead of celebrating we will be tense considering the next date we got for surgery was May 10th. Well.... if we decide to go ahead this time.
The Hematologist gave us a green chit. Nothing was wrong with his blood. no defects. We were happy. Then we went to see Dr. Cochrane. He gave an explanation as to what could have happened. It was difficult to understand because of all the medical jargon. One possibility was the anesthesia could have lead to dilution of Hemoglobin in the blood which is why the count recorded was too low. I didn't get much out of it but I told him frankly, that I didn't feel comfortable proceeding with the surgery. I trusted these two doctors but not the entire team anymore. I told him we needed time to think and reassess the situation. We also wanted to know, going forward, what precautions they were going to take to make sure it doesn't happen again. The doc said, now they knew how exactly to proceed and what to watch out for as the chances for any blood defects were ruled out. I was still skeptical, no matter what the doctor said. Now it seemed risky more than necessary.
At home, the week was going tough. Nikhil was healing well and looked happy again. But we had a big decision in front of us; either this way or that, and the clock was ticking. After the initial shock faded, we kept going back to the benefits of the surgery for Nikhil. Age wise, it was the ideal time to get this done. As we grow older the bones start hardening and the results are not that great. The doctors were good, time was good and we had got the new date. Everything was set. What was remaining was the guts to move forward with it.
On Dec 6th a day before Nikhil turned one, we made our decision. I don't remember the time leading up to this and what gave us the strength to decide, but we were ready to take a plunge. We had a lot of bad luck going that day and everything just seemed like a battle now. He had already been through a lot and I was going to put him through all this again. I felt horrible but prayed to God to stand by us, and take us through this safely. The scar on his head was to stay forever. But if this thing is fixed for good, he will feel proud of the scar when he grows up and will never question why we didn't go for it the second time. I dont want Nikhil to ever feel ashamed of his scar. The scar is a lifetime reminder of how brave hes beenand I hope when he grows up, he shows it off with great pride.
This was the right time for him and for his future. We didnt want to back out.
(Story continues on: 05_first birthday)
The Hematologist gave us a green chit. Nothing was wrong with his blood. no defects. We were happy. Then we went to see Dr. Cochrane. He gave an explanation as to what could have happened. It was difficult to understand because of all the medical jargon. One possibility was the anesthesia could have lead to dilution of Hemoglobin in the blood which is why the count recorded was too low. I didn't get much out of it but I told him frankly, that I didn't feel comfortable proceeding with the surgery. I trusted these two doctors but not the entire team anymore. I told him we needed time to think and reassess the situation. We also wanted to know, going forward, what precautions they were going to take to make sure it doesn't happen again. The doc said, now they knew how exactly to proceed and what to watch out for as the chances for any blood defects were ruled out. I was still skeptical, no matter what the doctor said. Now it seemed risky more than necessary.
At home, the week was going tough. Nikhil was healing well and looked happy again. But we had a big decision in front of us; either this way or that, and the clock was ticking. After the initial shock faded, we kept going back to the benefits of the surgery for Nikhil. Age wise, it was the ideal time to get this done. As we grow older the bones start hardening and the results are not that great. The doctors were good, time was good and we had got the new date. Everything was set. What was remaining was the guts to move forward with it.
On Dec 6th a day before Nikhil turned one, we made our decision. I don't remember the time leading up to this and what gave us the strength to decide, but we were ready to take a plunge. We had a lot of bad luck going that day and everything just seemed like a battle now. He had already been through a lot and I was going to put him through all this again. I felt horrible but prayed to God to stand by us, and take us through this safely. The scar on his head was to stay forever. But if this thing is fixed for good, he will feel proud of the scar when he grows up and will never question why we didn't go for it the second time. I dont want Nikhil to ever feel ashamed of his scar. The scar is a lifetime reminder of how brave hes beenand I hope when he grows up, he shows it off with great pride.
This was the right time for him and for his future. We didnt want to back out.
(Story continues on: 05_first birthday)