Always ask twice

If I am able to spread the word about nothing else, I want this message to be heard…don’t accept the first answer you hear, unless it is a satisfactory one… I was originally told our big city hospital wasnt in our PPO- I checked again. I was told we didnt have insurance coverage for housing- I checked again. In both cases, the first person didn’t know or care that they gave me wrong information. I’m not sure how Jake made it through his first semester of college.  He had spent 6 months at home recovering from meningitis, but he slept A LOT. We were more than nervous to let him go, but he needed to move on with his young, hopeful life. Jake has always done what’s expected without complaint. His blood tests came back decent in August. His pulmonary function test had not improved, but we attributed that to his inactivity. We had no idea that soon his body would soon be fighting leukemia.  When he was home for Thanksgiving,  he slept a lot. It didn’t seem abnornal. He went back to begin his 2nd trimester. 2 days in, he called us- fever and shortness of breath. At the student health services where I met him, he was tested for influenza, mono and strep- all negative. I immediately called the nurse of his pulmonologist -she was our “GO-TO-GAL”, she proclaimed. I expected and was prepared to drive the 2 hours immediately to get him seen. “Oh honey, it’s probably viral; there’s nothing we can do for him here; call his PCP.” Wrong answer…You are his PCP now- our local doctor no longer could see Jake- it was out of his league. I called anyway for a chest x-ray at the very least. “Take him to their ER if they won’t get him in.” I didn’t disagree, but I hated to put Jake through it. I emailed his neurologist and infectious disease doctors. I didn’t hear back. At 9 PM I emailed Dr. S. again, “Should I start him on prednisone? ” That got his attention , “Can you bring him to see me tomorrow? ” Our “go-to-nurse” amazingly scheduled an MRI for his chest and made room in the doctor’s  schedule then. Jake’s lungs were full and that warranted an admission. Jake felt bad enough, he didn’t protest. Dr. S. told me later that the nurse had not consulted the doctor about my call. He didn’t even know Jake was there that day. I refrained, but to this day, I want to march into her office and make sure she understands how serious Jake’s condition was that day. At the time though, none of us had any idea…

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