Where to start? Billy was born on March 7, 2001. He is our first and only child. On August 7, 2001 Billy was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 or Werdnig Hoffman Disease. We were told that our perfect baby boy would only be with us a short time and that he would never see his second birthday. To learn more about SMA please visit www.smasupport.com
Billy was 5 months old and a beautiful, smiling, such a happy go lucky baby. We couldn't accept what the doctors were telling us. We couldn't sit by and watch our son slip away from us. We searched for answers, for doctors, for anyone who could help him. Locally we were unable to find those answers. We scheduled an appointment with a neurologist in Boston Children's Hospital. Hoping that a hospital as reputable and well known as this could help him. Unfortunately there was nothing. After we got home, back to our search we went. That is when we found the SMA Support guestbook. That is also where we found hope! There we found families who were told the same thing we were, but their children were living beyond what we were told was possible. There were children 3,5, even 15 years old and somehow they had beaten the odds. We had to find out how. The parents and caregivers from SMA Support gave us so much information and so much hope. They pointed us toward Dr. John Bach, a doctor from New Jersey, who takes an Non Invasive approach to SMA. After our appointment, we came home called his doctors and told them what we had learned, and asked when we could get the equipment in place. We wanted him started immediately to try and maintain as much strength and respiratory stability as possible. A task much easier said than done. Again and again we were told that he was too young to use this equipment, it wouldn't help, and why would we want to do that to our child? Two words... "Our Child". Billy was our child, he was our world and if there was something out there that could help him and keep him as strong and as healthy as possible, then how could we not? The phone calls and the constant trying to convince didn't work. We were able to get Oxygen, a Pulse Oximeter and a suction machine.
On October 30, 2001 Bill went to Indiana for work where he had to stay over a night. Didn't seem like too big of a deal because at that point Billy seemed to be doing 'ok'. But that night I was laying him down, patting his bum like always. He was just about to fall asleep when his little eyes shot wide open and I could see that he wasn't breathing. I scooped him up, ran to the other room and grabbed a bulb syringe (those little bulbs they give you in the hospital for newborns) and started suctioning as much as I could from the back of his throat, got the Oxygen on and kept suctioning until he was breathing again. From that night on Billy has not been off his Pulse Ox, had he been on it, I probably could have caught it quicker. Bill got home in the morning so we could bring Billy into another appointment he had scheduled with his pulmonologist. As we were walking into the building Billy stopped breathing again. We ran as fast as we could, screamed at the secretary that he wasn't breathing and a nurse quickly got us in a room, started to suction and put him on Oxygen. His doctor came in, listened to him and said he wanted to admit him to the PICU, his office is right at the hospital so we walked him over, put him down in his crib and let the doctors do their thing. When we came back in he was on a BiPaP, fast asleep. There were machines and wires and IVs all over, but what I saw was my little guy, sleeping comfortably and looking so content. The doctors said he had aspirated on his food, developed pneumonia and one of his lungs had collapsed. Their hope was that the BiPaP would reinflate his lung if that didn't work he would have been intubated (a breathing tube into the lungs). He was also taken completely off food because his swallow had become too weak to safely eat anything orally. He had started aspirating on his food, and I know that is exactly what had happened the night before. I was really kicking myself at that point because a g-tube (feeding tube through the stomach) was the one thing that I was so hesitant about. We knew he would lose his swallowing abilities at some point, but we thought he was doing fine with it and we hoped that the g-tube surgery wouldn't be needed so soon. But at that time he was fast asleep, on his pappy and just looked so peaceful. And we were so very thankful that he was ok, that he was on his BiPaP now, that we had that appointment that day, were in the right place and that the doctors did come through for us when it came down too it.
He stayed in the PICU for a week and was then put in his own room for 2 more weeks. He had his g-tube surgery which wasn't nearly as scary as I thought. We were trained on how to use all of his new equipment, except for the Cough Assist machine which was being ordered. And by November 21 were so happy to come HOME!
To be continued.......