At 4 months old, Shane underwent surgery again, a procedure that was not supposed to be needed. By this time, I had spent many hours at the hospital's medical library and was becoming pretty knowledgeable about Shane's condition; to the annoyance of his doctors. I looked at every x-ray and the results of every test. Through my studying, I learned of a procedure that involved repairing the defect with use of muscle from the abdominal wall. I begged Dr. Caffey and his partner, Dr. Olden*, to try this instead of using the Gortex (nylon) patch they intended to use. The Gortex couldn't fight infection and wouldn't grow with Shane, which meant it would have to be replaced as Shane grew. They insisted they had never heard of this and even when I gave them articles taken from medical journals, they refused.
The tension between us was growing thicker everyday. They were surgeons from one of the top 10 hospitals in the country, how dare I even think to question them? I wasn't worried about their egos, only my son's health. Shane was now so unstable that there was no way he could be transported to another hospital, so I reluctantly gave in.
I was having health problems of my own. I developed a large knot between my right breast and my arm. Pumping that breast was excruciatingly painful and while pumping one evening at the House, in our room, I pumped blood. Then I began to have cold chills. Jeremy got more blankets and even laid on top of me, but I couldn't get warm. I was sweating so bad the sheets were drenched. When Jeremy took my temperature, I had a fever of 105F. He took me to the emergency room, where the doctors diagnosed me with severe mastitis (an infection of a milk duct in the breast). My temperature reached 106F before they could hook up IV fluids. My case was so severe, they were calling in medical students to come look at me; I started to feel like a guinea pig. I was dehydrated and they wanted to admit me, but as stubborn as I was, and as sick as Shane was, there was no way I was going to be separated from my son when he needed me so badly. They filled me up with fluids, gave me antibiotics, and released me. I lost my breast milk and I never got to nurse Shane. I felt like I had lost a bond with him that I could never regain.
Weeks later, and still on oxygen and a ventilator, Shane got his trach. By now, the surgeons and I were butting heads constantly. Shane continued to come down with infections and I continued to act like a tigress protecting her cub. I questioned the surgeons' decisions and they questioned mine. They were not used to dealing with a patient's mother for such an extended amount of time. It was during this time that Lance*, a little boy a week younger than Shane, came back to have his 2nd heart surgery. His parents, Jenny* and Ronnie*, had stayed at the House with us during Lance's first surgery visit. After Lance's second surgery, he came down with a staph infection at the same time as Shane. They were side by side in the Unit. Jenny and I spent a lot of hours together and we became good friends. Lance died a few weeks after his surgery. Writing this now brings tears to my eyes. I never thought I could hurt so much for another person as I did for Jenny. I never wanted to go to another baby's funeral as long as I live. Rhonda was at Lance's funeral; she was now pregnant with her third child. Shane recovered from his infection and by now, I felt as if we were waiting in line to be the next to lose our child.
Soon after, Shane came down with pneumonia. The oxygen level his blood had went so low that it caused brain damage. He was now blind, deaf, and what some people would call a "vegetable". Jeremy and I wouldn't give up until Shane did, and he wouldn't either. We argued with the surgeons, who now wanted a D.N.R. (Do Not Resuscitate) order. I knew he was still here with us, it wasn't time to let go! I felt it in my soul it wasn't time to let go of him yet so I fought. We refused the DNR and had to go up in front of the hospital ethics committee. The meeting was full of accusations, from both sides, and I spoke through choked tears. I tape recorded the entire meeting to try to keep everyone on track. They weren't happy about it but I wasn't going to be bullied into making the wrong decision for my son.
When it was over, the doctors did not get their D.N.R. order and care for Shane was continued. Rachel was beside us the whole way. And ironically, Shane was the Hospital's Miracle Network Telethon poster child that year.