Our Dear Canaan…
canaan samrudh joseph…
was born on April 14, 2016. He was rushed right to the NICU for an initial diagnosis of heavy and labored breathing. After two weeks, he was breathing on his own and was slowly getting used to being fed by the bottle instead of the NG tube. We were in the hospital for the next 5 weeks for him to increase nutrition intake. We were finally told that we could leave the NICU with an NG tube and would require to come back for a G tube surgery. Two days before our discharge, we were told that Canaan had a very rare form of biventricular hypertrophy and he had pulmonary valve stenosis. The chances were 50%! We were highly discouraged and but kept moving in faith and believing for the best.
During the next several months at home, Canaan had multiple medical appointments (in-home and hospital), two hospital admissions for infections and endless doctor visits. In Feb 2017, the cardiologist said that his heart was very sick, and he could pass away any time and they had nothing to offer. As even anesthesia was life-threatening to his heart. However, God sustained Canaan and he continued to thrive and show the doctors the champ that he was. During June 2017, Canaan was in and out of the hospital for infections and On July 17, Canaan got admitted what seemed like an infection. We thought we would be there for a few days like previously, but only to realize would be there for 5 mos (4.5 mos in CICU). During this time, one of the cardiac intensivists told us “he may die on the way to the CICU, we can’t do anything.” Those words still ring so fresh in my ear. Once in the CICU, we were at the crossroads of decision making of either palliative care or allow the risk of anesthesia on his body for a bronchoscope. After much prayers, we decided to go ahead with the bronchoscope. With 20 medical staff inside his room and 6 standing outside they asked us that we should be ready for the worst. We had our family and the whole church, friends of friends praying, God bought Canaan out a trooper and he survived the scope that suggested that his heart was very sick.
Canaan went for his first open heart surgery on August 7, 2017 with a huge risk - In the words of his cardiologist” he might be dead on the surgery table and never come out.” He came out of the surgery like a champ but was fighting chest tube out, losing about 1L/day. So, within 10 days he had to go for after another OHS, it was riskier than the previous as the body was still healing from the first. During this whole time of 1.5 months he was on a ventilator. He also had to go through thoracotomy as it was suggested to stop chest tube output. Finally, his chest tubes were removed after 2.5 mos and he was slowly weaning off the ventilator. However, we were asked to consider tracheostomy if he didn’t breathe on his own when-off the ventilator – eventually, Canaan was breathing at very high oxygen support of 12 L and were told that he would need tracheostomy with a ventilator for the rest of his life. We prayed and asked God for wisdom and we are so thankful for the whole medical team who respected our faith and our decisions. And God did answer yet again. Canaan proved that he could do it and we were out of the CICU in a week and Canaan could breathe on his own and he was discharged home with ND tube from the step-down unit during Thanksgiving of 2017. During this stay in the CICU, Canaan had numerous surgical procedures, sleep studies, tests, CPAP trials, etc.
On December 10, 2017, Canaan contracted an infection during a hospital well visit and was admitted but later discharged on December 21st and we were ecstatic to be home for Christmas.
On Jan 2, 2018, what seemed to be an ordinary day in our lives and Canaan had a high fever and we took him to the ER at Cincinnati Children’s Hospital as it's a stone throw distance. We were so sure that we would be transported to the main campus that mom went home to get the stroller only to come back and know that he had breathed his last on that ER table and went back home with 'an empty stroller.' We miss him a lot, especially his big brother Caleb and sometimes it seems like it just happened yesterday. It taught us that people may be smiling and seem happy but are fighting battles that no one knows of.
Through his short life he brought us closer to Jesus and taught us many things: to be a fighter and not to be defined by your circumstances. In his honor, we have started a non-profit, 'Conquering with Canaan', to support other heart families. We are still learning and developing our foundation. Last year, we were able to give 45 Conquerors Bags to families with long term admission in the CICU, inpatient family dinners, books for the NICU and CICU. We believe in collaboration with other great organizations could truly bring a difference to many other kids.
