Hospital Part One

We had our first appointment with our pulmonologist. She was amazing. She sat with us for an hour and a half, answering all of our questions and giving us so much information. She ordered us three machines for us to have at home, a nebulizer to give him medications to help with his airways and secretions, a suction machine to suck out secretions and a cough assist to help Wade cough. We got the first two machines right away, but were told they did not have a cough assist. Since Wade has weak muscles, his coughs are also very weak, not clearing anything.

Mid May, Wade came down with a cold and got very congested. We used the suction machine, but it almost seemed to be making it worse. It just brought up more junk in his throat but was not clearing it. All through the night, Wade seemed to be getting worse. He was getting more congested and was having a harder time breathing. At about 6 am, Wade looked white and wasn't breathing very well. We took him to the emergency room. They took him in at first to check his temperature, talk to us about what was wrong and they hooked him up to see his oxygen and heart rate. His oxygen was staying in the low 80's. They told me to follow them and they would put us in a room. I have gone to the emergency room a few times and always had to wait hours. This worried me. It got worse when we were put into a huge room with clear doors and about 15 people started working on him. An amazing doctor was there and would tell me everything that was happening. Ten or so workers stood outside watching everyone in the room. It was very scary. They did blood work, gave him oxygen, did an x-ray and everything came back ok. They told us he would be transported by ambulance to the children's hospital, about 20 minutes away.

We got to the children's hospital and were put into the pediatric icu. We were there for four days. Wade had rhinovirus, which is just a common cold. However, his body can't handle it like ours can. He can't cough out his secretions and it makes breathing so much more difficult. They wanted us to get a cough assist before we left and get Wade healthier. A lady we had met through our facebook connections, who had a girl with SMA, helped us get the cough machine we needed. Wade was put on one hour breathing treatments that consisted or nebulizer, cough assist and suctioning. They got further apart as Wade got better. When Wade slept, his oxygen levels would drop. Talking to other families, we were told we needed to ask for a bipap machine. This machine gives the lungs a break so they aren't being over worked. However, we were told he did not need one and would be put on oxygen while he slept. After a few days we were moved out of the icu and onto the floor. While there, a lady with a son who has SMA came to visit me. It was nice to talk to someone in person and ask all the questions I had. We were there for two more days and then released home.

We were excited to be home again with our older son, as he stayed with my mom while we were in the hospital, and it was good to have Wade home again. He was still a little congested, so we continued his breathing treatments, praying he would get better.