September 17, 2022
I continued to monitor his temperature throughout the day and it ranged from 37.6 and 38.2. To be on the safe side I called the hospital and asked to have the on-call oncology fellow paged. When he phoned back we talked through how the day had been going and I let him know that I'd given Benjamin some Tylenol after lunch in the hopes of being able to manage his fever at home. He asked me if they'd done a nose swab the night before and when I said that they hadn't he told me he would like to confer with his colleagues and promised to call back shortly. My phone rang a few minutes later. On the other end of the line the oncology fellow recommended that I take Benjamin's temperature before bed and phone him back with the read. From there he'd let me know if we'd need to come back in or if we could manage from home.
After bath and cozied up in his jammies, I took Benjamin's temperature for what felt like the hundredth time in three days. I watched the numbers climb until the thermometer beeped. His fever had returned and climbed to 38.3 which is the exact baseline read that means we need to get to the hospital right away. I called the fellow and he confirmed what I was expecting: that we'd need to make our third trip to SickKids in as many days.
As I double-checked the contents of our hospital go back David offered to take my place. While I knew I was emotionally exhausted I declined for a few reasons. The first being that after the trauma of the night before where I saw Benjamin's blood-soaked t-shirt as he lay tiny and helpless in the emergency room hospital bed, I desperately needed a more positive hospital experience to be able to move forward. After speaking to the oncology fellow a couple of times that day and knowing he would be the one we'd be seeing I had a really good gut feeling about him. I was hopeful that he would be able to play a role in making this a better experience. The second reason is that I'm what some would call Type A and some would call a control freak. Neither is untrue. While being at the hospital is certainly less than ideal, being at home, waiting, wondering, alone with my thoughts is infinitely worse for someone like me. I've made an effort unlike ever before in my life to learn everything I can about Benjamin's condition, the medical terms associated with it, how to read his test results (which come to the app on my phone, not David's) and the hospital processes, procedures and protocols. Whether accurate or not, I feel like I'm the best possible advocate for Benjamin. Aside from the one chemo appointment I missed when I tested positive for COVID, I've been at every single hospital appointment, surgery, scan, etc.
We drove through the dark city streets, once again looking longingly at the families out walking together, the friends gathered on a patio, the students playing on the soccer fields under the floodlights. We parked in the underground lot using our discounted parking pass (something I wish so badly that we didn't need). I got Benjamin settled into the wheelchair and we headed up to the busy ER. The triage line moved quickly and thankfully a room was ready for us immediately. When we were shown inside the nurse was already set up and waiting for us. As Benjamin got lost in his tablet I followed the advice I'd gotten from the oncology fellow on the phone earlier that evening and quietly explained to her that the night before Benjamin's line had been left exposed and requested that a nurse that is very familiar and comfortable with accessing a Power Port be the one to start the line. She assured me that she was the right person for the job and she did it quickly. She drew the vials of dark purplish red blood and prepared them on her tray to be sent to the lab. I watched her double, triple, quadruple check the caps on the line. As she was leaving the room she told me that she'd ask that any nurse coming in for the rest of our stay check the caps on Benjamin's lines. The reassurance and trust I felt from the extra care she took and empathy she showed me was exactly the sort of experience I had been hoping for.
The next time the door opened I was surprised to see the oncology fellow. You see, hospital protocol dictates that after an initial visit from the nurse the patient is to be examined by the ER doctor as the care of the patients in the ER is ultimately their responsibility. As though he saw the confusion in my eyes, the oncology fellow explained that he'd been watching for Benjamin's blood work to come back. After assuring me that all of his counts looked good he went on to explain that he didn't want to bottleneck the process if he got tied up later. He knew this was our third night in the ER and wanted to do everything he could to get us out of there as soon as possible. He performed a very thorough exam and Benjamin was happy and receptive to him, rhyming off a number of facts about animals that he'd learning from the show, Wild Kratts (the guys formerly of Zooboomafu) that he'd gotten into over the past few days. The doctor matched his level of enthusiasm. Another very positive experience.
Shortly after we received a knock on the door. It was the on-call ER doctor. She was friendly and warm. She performed her exam to be safe but arrived prepared with discharge papers. And just like that, before the clock struck midnight, we were on our way home.
I drove us home, tears streaming the whole way. This time they weren't tears of fear, helplessness, sadness or despair. They were tears of relief. As awful as it is to be in the ER with your sick child, that was exactly the positive experience I'd been hoping for. The one I desperately needed.
After carrying Benjamin inside and tucking him into bed, a bed David had thoughtfully set up for him with every single stuffy neatly arranged in a ring, I walked into our bedroom where David was waiting for me. He asked how it went and to our surprise I laughed. I told him, only half kidding, that if I'd let him take Benjamin to the hospital that night, and he'd come home having had the smooth experience I'd just had, that I'd be so mad. I told him it was exactly what I'd needed and that I felt ready to take on whatever was next. And I meant it.