People say that it is good to have a hope. These last 10 months I have lived with a hope. A hope to make my son's life healthy.
These last 10 months have snatched a lot of from me. But my efforts to treat my son were not enough.
Atharv came into our lives on January 12, 2016. He was our little bundle of joy, a beautiful dream. He was born perfect at right time with the right weight. He was born through a C-section. He cried at birth. It was a sign of his normalcy.
We have a daughter who is elder to Atharv. As Atharv grew, we kept comparing his achievement of milestones to those of our daughter, when finally one day he was unable to achieve his head holding. He started banging his head, he was less responsive and soon his jerky movements started. For us, it was a new thing so we went to a local pediatrician, who diagnosed him with certain kind of epilepsy.
Our happiness was short-lived and our long journey, full of stress and emotional setback started. Atharv was diagnosed with West syndrome, a neurological disease, and global developmental delay which made the life painful for Atharv. He was diagnosed with this disease in June 2016 and since then despite giving him medication, his condition deteriorated every month.
Because of his poor neck holding, he was unable to eat. His weight started to fall. In next 6 months he could not gain even 1 gram of weight. He threw whatever he ate. Because of his neurological condition and poor immune system and recurring spasms, he had to be admitted again to PGI in November 2016. This time his MRI shown atrophy in his brain. With 3/4 brain atrophied, there was not much hope left for him. Doctors told us that he will not survive for much longer as due to his aspirations of secretions, he was catching aspirational pneumonia time and again. This was the time his lungs started weakening.
Atharv's was on and off on oxygen since the diagnosis of his problem. He had to be hospitalized every now and then. But his every visit to hospital worsened his problems and shortened his life expectancy and shattered our hopes of taking him out of this very bad disease.
Our love for Atharv grew stronger with every passing day. Atharv never ever recognized us. He just kept rolling his eyes. Our bonding with Atharv grew stronger every day due to the time we spent with him in hospital.
Due to his poor weight and inability to eat, PEG tube was inserted in him. Our hopes of his recovery were reignited. But, he was admitted back to the hospital because of pneumonia. In February 2017, his left lung collapsed, which was first life threatening sign for him. By now, doctors had understood that he won't survive for much longer. But as parents, our hopes were still there.
We celebrated his first birthday in hospital emergency.
He was discharged on oxygen in February. He stayed at home for the entire month of March. In April, his both lungs collapsed. By now we have understood that he is critical and now our hopes rested on doctors and God.
Such children generally die because of respiratory failure or cardiac arrest. Atharv was admitted again to hospital with respiratory distress, where doctors told us to be prepared for the final call any minute. This happened on 14 April but because of toughness of Atharv to fight, he survived. He suffered cardiac arrest on 29th April. He was given CPR to revive his heart.
I am writing this blog when my son is still with me. I know somewhere in heart that he is alive just because of medicines and incubator but I am still hoping for a miracle to happen. But these last one and a half years of my life have been full of emotions and love. I have given my full love and attention to him which I wouldn't have been able to give him, had he been normal..
He suffered 3 back to back Cardiac arrests, 1st at 3.30 am where he was recovered due to CPR, 2nd at 5 am but he was saved again due to CPR. But last time he could not survive when he suffered last cardiac arrest at around 5.45 am. This time when doctors arrived to do CPR on him, we asked them to let him go.
