REAL LIFE

Yesterday, I brought my son Nicholas to the National Neurology Hospital in London. I requested (rather energetically) an emergency appointment because Nick's left leg was stiff, painful and periodically in spasm. I had a feeling that perhaps his spinal cord pain pump wasn't functioning properly. We arrived at noon and waited in the lounge area of the neuro-rehab inpatient unit. We had suitcases with us, because the doctor told us that Nick would be admitted. A special x-ray of his pump using radio-active dye was planned for the afternoon. An electric air mattress was located and placed on Nick's bed after a member of staff had cleaned and disinfected his room. Finally, we left the lounge to get settled. At 3pm, we were brought to the x-ray area where Nick was to have his procedure. We got him transferred to the narrow table under the cameras and I went outside to await the results. After twenty minutes or so, the doors opened and our doctor came out, still drying her disinfected hands. "Nothing?" I asked, thinking the test was normal and we would have to look for other reasons that Nick's leg was so stiff and painful. "Oh, no", she exclaimed, "there was something". Apparently the catheter leading from the pump to the spinal cord was completely blocked. We had no way of knowing if any medicine at all was reaching its destination of the spinal cord. A course of oral baclofen (the muscle relaxant in the pump) was ordered and we were told to monitor the pain and wait for surgery to replace the pump. This week, Nicholas will have emergency surgery to replace and reposition his pain pump (in a new location in order to prevent a possible repeat failure if the problem related to its position). It's a big surgery and we are all worried. Every time that Nicholas has a big surgery like this, we worry that he will not survive. This is real life.