Nelson‘s Lung Disease

Hello everyone. My name is Evelyn and I created this account on behalf of my son Nelson. I have three children ages 17, 6, and 3 years old. Nelson was diagnosed with bronchiolitis obliterans a year ago.  He was born a healthy baby boy. At 11 months old he came home from daycare with a fever. I thought maybe it was something viral or even an ear infection. After having a few tests done he was diagnosed with pneumonia. He was admitted for observation because his oxygen was low while sleeping. The very next day his pneumonia spread to both of his lungs and he had to be medflighted to Boston Children's Hospital. Once there and in the ICU, doctors ran more tests and Nelson tested positive for adenovirus. That virus attacked his respiratory system. It was the scariest moment of my life. I was so confused as to how all of this happened within 24 hours. He remained in the ICU for about a week and had a very hard time breathing. He needed a BIPAP at one point because he couldn't breathe on his own. After that admission, he was hospitalized with pneumonia five times within three months. I was confused and didn't know what was going to happen to my son. It was a total nightmare. Nelson eventually had a swallow study done because of his reoccurring episodes of pneumonia. The results were positive for aspiration. Shortly after his swallow study, he had a NG feeding tube placed. He was unable to drink anything because he would aspirate. He had several other admissions even after his feeding tube was placed for respiratory distress. At the age of two he was diagnosed with bronchiolitis obliterans. There is no cure for it. He goes to children's and receives IVIG infusions every four weeks two days in a row, 8 hours each day. They are very long and are mentally and physically draining. Watching him lay on the bed and not able to move around much because he's hooked onto so many things at once, breaks my heart.  It took some time to get used to. At the time we lived in Rockland but the commute to the hospital was too much. So we moved to Canton and we've been here almost a year now. We moved to be closer to the hospital. Make a Wish sent us to Disney for his birthday this past January for one week. It was an amazing experience. Nelson has multiple appointments in between his infusions. The amount of money we have spent on gas and parking alone is outrageous. That doesn't include everything else. Everything is starting to add up and take a toll on us financially.  I am home full-time taking care of him. He is having surgery July 24th to have a GTube and a port placed. He currently has a NG tube placed which he receives formula through. He gets elecare junior for the calories and nutrients. He has multiple food allergies so feeding him is a challenge. I have to cook separate meals everyday and shop at whole foods for him. Since he will need help long-term he is having a GTube placed and having the NG removed. He is also having a port placed the same day. His veins are bruised in his arms and hands from the IVs that are placed every four weeks at his infusions. That will be placed under his skin on his chest. My son is a trooper. I get all of my strength from him. He is the reason why I wake up everyday and I'm so thankful for life itself. I never thought something like this would happen to me. I get asked all the time even by strangers "how do you stay so strong.." I tell everyone "It could be worse..." That is how I am able to remain so strong and walk around with a smile on my face every single day. I see other kids in the hospital who are worse than Nelson. I just count my blessings each day. Thank you for taking your time to read my son's story. God bless.