August 8th, 2008. Lexx woke up with a runny nose, and seemed very lethargic, and did not want to nurse. I thought he was just tired, and caught a cold. He fell back asleep while I held him in my arms. An hour later, he woke up, coughing, but still seemed very tired. By this time, he had not eaten anything for quite some time, but again, he did not want to nurse. I tried waking him up, and stimulating him, but he just look at me with droopy eyes. I held him up, looked at him, and he looked at me, gasping for air, and then he went limp in my arms. His face was blue, he was not breathing!! Mike (daddy) called 911. I moved him around and bounced him, and finally, he took a breath. Moving him around must have opened up something that was blocking his airway. Everything happened so fast. The ambulance was there in a matter of minutes and the next thing we knew, we were sitting in emerg. Because of his condition, he was transported immediately to the Alberta Childrens Hospital in Calgary, where he stayed in intensive care for 8 weeks. The first few days there was awful. He fought so hard but his xrays showed no signs of improvement. His lungs were completely whited out, meaning that they were full of secretions. Finally after the third day, the doctors decided to intubate him (put in a breathing tube). We were completely in shock. We went from having our little boy at home to watching over him in a hospital bed, with doctors telling us that realistically, he probably would not survive this pneumonia. It was so hard to believe!! My beautiful boy might not live. Day in and day out he fought and fought. SMA was such a rare condition, that the doctors weren't familiar with it at all. He ended up with a pneumo thorax, which is a hole in his lung, which let the air escape from the lung and be trapped in between the lung and the chest wall. He needed three chest tubes inserted into this space to let the air escape while his lung healed. Two of the three chest tubes were inserted in ICU, but the third needed to be bigger, and we were faced with his first surgery. His surgeon was great. Dr. Mary Brindle put us at ease with the surgery, explaining and answering all of our questions. After the pneumo thoracies healed, it was a matter of getting his lungs clear, which took some time. By the end of 4 weeks, the doctors felt that we should try extubating him (taking out the breathing tube) and see if he could breath using just a bipap machine. (A bipap machine pushes air into his lungs with each breath, essentially giving him breaths, since he wasn't strong enough to take adequate breaths on his own). If he couldn't tolerate it, he would have to be reintubated, until we could try again. He did great!! From there, he spent the next 4 weeks in the hospital, slowing coming off the bipap machine, and only using it at night, giving him a break from his hard work of breathing on his own during the day.
For the 8 weeks, he was fed through a NG tube. This is a tube that goes through his nose, into his stomach, and his milk is pumped through. Although I knew that he would eventually lose his swallow as a result of his SMA, I wasn't prepared for it. The last week that we were at the hospital, he was put through a swallow study, which tells us if it's safe for him to eat orally. It was confirmed that it wasn't safe, and that he had lost his swallow. He would not be able to eat orally anymore. It was then that I realized that the last time I nursed him was in emergency 8 weeks prior. That was so hard for me. Part of me knew that it was safer for him to be tube fed, but part of me felt like a failure, one of the most important things for a mom to do was to feed their child, and to me, that meant in the traditional sense, orally. It took some time, but I was eventually able to get over it and accept it. This brought about his second surgery. His G-Tube surgery.
