It was sometime past midnight when we all finally fell asleep after a very long day. You started your day at 8am with blood labs, followed by a lumbar puncture, 2 chemo infusions, and oral chemo. Your dad and I managed to jigsaw our way into the fold out couch in the inpatient room, as you lay cocooned in a mixture of hospital sheets and your Star Wars furry blanket. I knew our sleep would not be restful. The fluid they were running to hydrate you caused you to have to get up to go to the bathroom every 90 minutes, not to mention the constant one-volume-fits-all beeping from that machine. The nurse with the squeakiest shoes was scheduled to check your vitals every four hours, waking you to take your temperature and blood pressure.
At 3am, I opened my eyes to see the nurse arranging to infuse an unknown medication. I stopped her. “What is that?” I asked, rubbing my eyes. Straight of out slumber, fear and anxiety shot through me as she said exactly what I didn’t want to hear, “He spiked a fever and the doctor ordered antibiotics,” In that moment, my mind transported back to 7 months ago when my son was overdosed with antibiotics, developed Clostridium difficile, (a bacterium that can cause diarrhea and inflammation of the colon) and became hospital bound for the entire month of December. I was not going to the let that happen again. The dialogue was as follows:
“I am not comfortable with my son receiving an antibiotic at this time,”
“I spoke to the doctor and we need to make sure he does not have an infection.”
“I understand that the doctor is following protocol, but his history reveals that he develops fevers after receiving ARA-C chemo.”
“Well, I understand, but we need to be proactive and give him the antibiotic, just in case.”
“It’s 3am, I rather hold off on the antibiotic, give him Tylenol and see if the fever comes back later in the morning. During rounds, I can consult with the doctor myself.”
I was empowered by being your mom. I know you and love you and think about you more than any doctor or nurse every will. You are Seth, not lymphoblastic lymphoma. Anyone that forgets that, needs to be reminded.
Rounds came at 10am, 3 hours after the Tylenol stopped keeping your “fever” from returning. I stood infront of 15 medical professionals, confident and clear. There was already a plan in place for you to stay another night in the hospital. Nope. Antibiotics were ordered and ready to be administered. Nope.
He received his 2nd of 4 doses of ARA-C around 3:30 pm and as I predicted, the fever returned 5 hours later. We sprung into action, removed warm blankets, gave him cold water to drink, and alerted friends and family to keep praying for Seth. By 9:30 pm, body temperature was normal and we needed to wait just 30 more minutes for preliminary blood culture results to come back negative.
It felt like hours waiting to find out if I was right. I began to question myself and my decisions that day. Was I too brazen with the doctors? Did fear and trauma cloud my better judgement? What if he really did develop an infection and I kept him from products that could fight it? I turned to you, Seth, and your smiling face and laughter assured me. You are so brave and strong. I am honored to be your mother and feel so blessed to be the one that God chose for you.
By 10:30 pm I was signing your discharge papers and we headed home, so happy, but so weary.