The Four Walls of My Freedom by Donna Thomson Page B

there was a white sheet crumpled and discarded after someone’s brief respite. I lay down and slept for a few hours. When I came back to the blazing lights of the ICU , the nurse told me that Nicholas had spiked a high fever and that a urine culture showed a severe urinary tract infection, probably caused by the catheter. They started Nicholas on an antibiotic and I continued to worry, because Nicholas had still not woken up from the surgery. He began to have frequent diarrhea, and C-dificil, the dreaded hospital superbug, was diagnosed. The strongest antibiotic was prescribed, and Nick continued to sleep. Days passed and even needle jabs did not wake him.
    Almost ten days later, Nicholas had still not woken up and I was frantic, thinking that the morphine overdose had caused more brain damage. Finally, the neurologist was called and he peered at Nick, checking his pupils. “He’s snowed. The level of his epilepsy medicine is probably too high. We’ll test it.” The medication level was more than five times higher than normal and this had been causing Nicholas to be so drugged. The doctors concluded that Nick must have reacted in an unpredictable way to the mixture of antibiotic and epilepsy medicines. Finally, my boy awoke and I knew that he was all right. He was crying and blowing kisses, asking to go home.
    After six days on the regular ward, our discharge date arrived and we were told to await a transport ambulance that would deliver Nick to our house on a stretcher. Discharge papers were signed and we waited for the transport to arrive. And waited. Apparently the ambulance service was busy with more urgent cases than simple stretcher taxi bookings. I was told that it might be midnight before we arrived home. After six hours of waiting, I decided to take Nick home myself in our van. I moved the front seat as far back as I could, then reclined the seat to its maximum. I put pillows on the floor to create a resting place for Nick’s lower legs and observed the result. It looked good and I thought Nicholas could be comfortable in the seat. I just needed help to lift him into the van without grazing his casted leg on the door frame. Any slight jar might be very painful. Staff on the ward refused to help move Nicholas to the van because the doctor had ordered ambulance transport (never mind that it did not appear). Luckily, I had a young male helper with me and between the two of us, we managed to get Nicholas home by early evening without any tears.
    I had transformed our family room into Nick’s home hospital. I had his hospital bed positioned in front of the television and had managed to coerce the homecare authorities into providing seven nights of nursing. Our helper stayed with Nick while I headed out to the twenty-four-hour pharmacy to collect prescriptions for liquid codeine and muscle relaxants to ease the postoperative spasms that are severe in children with cerebral palsy. The pharmacist had the painkiller in stock, but said that he would order the muscle relaxants and have them by the morning. I thought we could manage with just the painkiller and besides, I thought, I had no choice.
    When I arrived home, Nicholas was screaming and in full body spasm. A young nurse had arrived and as I was trying to soothe Nick, she emptied a syringe of codeine into his feeding tube. I heard the front door open — it was Jim coming home from work. He asked the nurse to move her car so he could park his to one side in the driveway. Parking behind the nurse would have meant getting up at 6 a.m., the end of her shift, something Jim didn’t want to do. The van was safely in the garage. That night, there was a severe weather warning for heavy snow — the wind had come up and the air outside was white already, the visibility poor.
    Watching Nicholas writhe and scream was intolerable, so I decided to call the hospital surgical ward and request that they give me some muscle relaxant medicine to help