aidens sick again

Friday, Aiden's lungs were doing pretty good. He couldn't really stand to be off his bipap very long, but he could be off for few minutes. I went to work like any other morning, while grandpa don stayed at the hospital to hang out with our little buddy. After work, I arrived at the hospital to find the doctor ready to send aiden home. He said he was doing good, back to his "home settings", and that he thought he would catch something if he stayed at the hospital. Don and I packed all our stuff up and headed for the car. Laura, aidens grandma, soon came to see us. After we got just enough meds for the night, and had all our stuff packed up, i picked aiden up and headed for the car. I noticed he was having a little trouble breathing when we were almost to the car. I ran to the car, don ran behind me. He plugged the bipap in, while i suctioned aidens airway out, and tried to plug his other monitor in. Laura got to the car and began helping don with aidens bipap. Before I knew it, Aiden had stopped breathing. Laura scooped him up and ran him to the ER. She did CPR all the way to the ER as well.
After many minutes, the doctors came out and told us they had to put a ventilator tube down his air way to help him breath. He was breathing on his own at this point, just with some help of a few breaths. He told us to come in and see him. All I could think about was how we were just on our way home, and now hes on a ventilator. I walked in to my babies helpless body laying on a hospital bed. Everyone was working around him. I cried as i watched him fight his ventilator tube. He hated it, and wanted it out. I thought about the minutes he had been alone, in a room full of people he didnt know, while they got him stable.. and then i cried some more. I watched him and cried, i was very caught up in my thoughts and emotions. All the sudden, I heard familiar voice. It was the ICU doctor that had just sent him home. He began telling me that Aidens disease is a progressive disease and we needed to think about alternative care for him, or our next move. He went on telling me how even if aiden survives this episode, it will happen again and again, until he doesn't make it anymore. I stood there staring at him, not sure how to respond. He soon walked away. I soon felt mad, sad, furious, every emotion imaginable at that moment. In the past, I had taken Aiden to cincinnati, where they specialized in his disease. The doctors there knew aiden, they never questioned aidens ability to survive. I suddenly realized, i was enraged with anger. Aiden was, and had been sick for a little while. He had been sick before this, and just needed time to get over his illness. BUT i knew, he would get better and go back home.
Aiden has always been so full of life. He wakes up every morning with a smile on his face, and takes whatever life has to throw at him. I suddenly felt my fury rise. This doctor had only taken care of aiden one time, one day. I have fought this disease with him for the past seven months now. Aiden had been sick for a few weeks now, but he was still my happy baby. He was not ready to give up, and not ready for us to give up on him yet.
I soon realized, I was staring at the only thing that mattered, Aiden. He needed me, his mommy, to help him get better and stay calm. The vent tube was still down, but the nurse was now instructing a studen how to give aiden a few supportive breaths. We waited in that room for a few more minutes, until the nurse took us up to the PICU. We went to the same room we had left, only now, aiden would be on a ventilator. His lungs were weak and he just needed a break to get better. He slept pretty good that night.
The next morning, the respitory therapist told us she didn't think he needed the vent. She felt he was strong enough to breath on his own. A few hours later, they pulled the tube out of his airway. He did pretty good over the next few days. He did his treatments, and only dropped a few times. Monday morning rolled around before we knew it. The doctor had ordered an xray so we could see how aidens lungs were responding to the treatment. This was not good news, his whole right lung was covered with pnemonia. The doctor told us we had a few options. 1.)trec and vent him 2.)go home with hospic 3.)reventilate him 4.) go to cincinnati.
I didn't feel like these were things I wanted to do. Aiden needed time. Why couldn't they give him time. The therapist soon came back in to tell me, if aiden needed treatments every 4 hours, they could do it, there.. where I could stay with Aiden. Soon our lung doctor came in to tell me he would take care of aiden. Good care of aiden. He would get him better and ready to go back home. So we have decided to stay and be with him.