September 16, 2022
After the previous day's events I woke up hoping that Benjamin's fever had broken. I waited nervously for the numbers to stop climbing as I took his temperature orally and had a wave of relief wash over me when the thermometer beeped. 37.0 degrees Celsius. No fever!Meanwhile, David was dropping Ella off at school. Soon after he got home, after only having been awake for a couple of hours, Benjamin was asking for a nap. We had gotten home just after midnight the night before and I tried to quiet the nagging pit in my stomach that he wasn't sick, that he was just tired from having gone to sleep so far beyond his bedtime.
As he slept David left to play in his member-guest tournament after agreeing to break golf etiquette and keep his phone on the entire time in case there was an emergency. I, in turn, promised to only call in the event of an emergency and to text regular updates with his temperature reading.
When Benjamin woke up a couple of hours later his temperature had jumped from 37.0 to 37.8 degrees Celsius. The technical qualifying oral temperature for a fever in a child of his age is 37.6 but in Benjamin's case specifically his temperature needs to reach 38.0 and remain at least that high for one hour OR be over 38.3 a single time to warrant paging the on-call oncology fellow at the hospital. Of course if there are any new presenting symptoms or changes/worsening of existing symptoms, paging the on-call oncology fellow is also required.
Benjamin developed a dry cough that afternoon and his fever hovered over the 37.6 mark all day before spiking up to 38.3 at 7:00PM. I called the on-call oncology fellow and he told us to come in. David was ten minutes out from returning from his round of golf and in that time I got Benjamin and Ella out of the bath, into their pyjamas and onto the porch with their shoes on. I double-checked the hospital bag to make sure we had everything we'd need to have as comfortable a stay as possible. I put a collar and leash on our 9-week old puppy, Marvel, and we joined the kids on the porch. When David pulled up I suggested he take Ella and Marvel for an evening walk before heading to the car to get Benjamin settled into his car seat. We drove away to the heartbreaking cries of Ella calling out, "Mama! Mama! Mama!". Poor thing. I can't even imagine what it must be like to be two and not understand why your mum and brother keep rushing off together and leaving you behind. The mum guilt I feel when I think about this journey from her perspective tears me up.
We drove through the city as the sky darkened before 8:00PM, a sure sign that fall was well on its way. People walking along the streets laughing and talking, couples and groups were on patios holding on to the last of the summer nights. Seeing such normalcy made our situation feel all the more surreal. Throughout the drive I glanced at the little face sitting behind me, looking around, smiling and occasionally bursting into excited chatter or asking me what the song on the radio was about. Even with a fever, even knowing he was going back to Emerg, he still radiates so much love and light.
When we arrived I lifted him out of his car seat and for the second time in two days I lowered him into a black wheelchair with the stark white stencilled letters on the back that spelled "SICKKIDS". I pushed him to the elevators, out in to the lobby, we completed screening and were given our hospital-issued masks before making our way into the Emerg triage lineup. That night was busy, much more so than the previous day. The sounds of kids crying, coughing, sneezing and whining from feeling unwell were much more pronounced this time.
Finally it was our turn to speak to the nurse. She had been expecting us but because it was so busy we were told there would be a bit of a wait before a room would be ready for us. Thank goodness Benjamin was in a wheelchair as he had a guaranteed seat to sit in as we waited and I could control which way he faced deepening on where the coughs and sneezes were coming from in the waiting room.
Within fifteen or twenty minutes a nurse called Benjamin's name and we followed her down the hall I'd come to know all too well since last December. Our room was much smaller than the one we'd had the day before with three closed walls and one made entirely of glass that faced the hallway. It was cozy with a bed for Benjamin and right next to it, a chair for me.
We started our Emerg hospital ritual. I lifted him up and laid him down on the bed. Went out into the hall and got two clean blankets from the linen cart, one to put over him and one to use as a pillow for under his head. I got the bed into the perfect reclined position, handed him his tablet and his Sidekick Superhero bunny which he clutched tightly under his arm.
Just then, one of the hospital's Child Life Specialists knocked on the door to ask if we needed anything. I said we were all set. She looked at Benjamin and said, "I guess my only job is to make sure that there are some good things in the treasure chest. I'll be right back." Minutes later she returned with four items, describing each one as she showed it to him: a glow-in-the-dark squishy ball, bubblegum slime, a Hot Wheels car and something else that's escaping me at the moment. She told him after his butterfly was in he could choose two of the four items.
It wasn't long before the nurse came in, rolling her cart ahead of her, to begin the process of taking his vitals, accessing his port and starting his IV drip. By now his fever was up to 38.7, higher than when we'd left the house. My heart fell. All I wanted was to see the numbers drop, especially because the doctors and nurses hadn't yet figured out the source of the fever. All I wanted was for it to resolve on its own which would indicate that it was mostly likely a virus that simply needed to run its course. A best case scenario.
After a particularly brutal accessing of his port, the nurse drew the blood required for his second blood culture in two days. She flushed the line when she finished and left the room. Benjamin calmed down and lay quietly in the hospital bed with his tablet and his bunny. Though it was long past his bedtime, he was unable to sleep. As he busied himself I took the time to update David on where we were at so far before mindlessly scrolling through my phone trying my best not to spiral. Restless I got up to fix Benjamin's blankets. As I was doing so I saw something that at first glance confused me, before the most intense feeling of panic I'd ever experienced set in. Benjamin was laying on his side port side up. His light grey Benjamin the Brave t-shirt was completely soaked in blood from his sleeve down to the hem, from his spine to his belly button. My first thought was, "Oh my God, he's bleeding out!". As someone with no medical training beyond being an oncology mum, what I perceived to be a LOT of blood, in a situation where it was completely unexpected, it shook me to my core and it's an image and feelings that I'm not sure I'll ever get over. Trying not to alarm him, I started repeatedly pushing the button in our room to call for the nurse. I walked briskly into the hall and began frantically looking around and calling for a nurse. I finally caught a nurse's attention and she followed me into our room and I pointed to the blood-soaked t-shirt. Benjamin looked up at me with those innocent brown eyes and asked what was the matter. I couldn't answer him as it was taking everything I had not to throw up and faint. Luckily it was a small room and the chair was right there. I took a seat quickly. I remember the nurse saying it wasn't as bad as it looked and that the liquid was a mix of the saline solution and blood, that it wasn't all blood. She also told me that the line was exposed and as result that there was a small risk of infection as air is not intended to enter the line for longer periods of time. She continued, saying that she may need to remove Benjamin's butterfly and put in a fresh one. Benjamin heard her say that and completely melted down as the in and out of the needle is the worst part for him. Never mind the fact that the numbing effect of his Emla patch had most definitely worn off. In the end, she was able to sanitize and cap the exposed line, sparing Benjamin any additional pain, anxiety and trauma. Up until this point Benjamin had not seen the excess of blood and fluid covering 1/4 of his t-shirt but when I told him we'd have to change his top and asked why he caught a glimpse. My heart sank. Like he hasn't already been through enough. He started asking questions and I tried my best to answer and explain that it wasn't as bad as it looked and that everything was going to be ok. With tears streaming down his face he said, "But I don't want my Benjamin the Brave t-shirt to be ruined. I love that shirt." My heart broke. I assured him that I would be able to get the stain out at home but in spite of being nicknamed Martha after Martha Stewart, in part because I can get most stains out of anything, I had my doubts. Blood is always a tough one. In my head the wheels were spinning and I planned to buy a replacement from the Etsy shop where I'd specially ordered it for him for Valentine's Day.
At that moment the Child Life Specialist poked her head in, caught a glimpse of the mess and said she was going to go look for a fresh new t-shirt for Benjamin. On her way out she looked at him and told him that because he was so brave he could have all four of the treasure chest items she'd brought in to show him.
The Emerg doctor arrived and upon completing her exam she noted that Benjamin was breathing heavily from his stomach which could indicate a chest infection like pneumonia. She told me she was going to order chest x-rays and that someone from Transport would be arriving soon to take us there. Minutes later I was walking behind Benjamin's hospital bed as he was being wheeled through the halls to have x-rays taken. As we were walking we passed a mother with her young daughter who was maybe two and to my shock and horror the mother was unmasked, walking the halls of Emerg at SickKids. Not only is it against the hospital's policy but how selfish can you be to potentially expose already sick children and the people who are caring for them to something you may be carrying?!
The x-ray tech was kind and sweet and I could tell that even though Benjamin was reaching a new level of exhaustion that he felt comfortable with her. He started pointing out all of the different animals in the different kinds of aircrafts that playfully covered the walls of the x-ray room. She was quick and within minutes we were in the hallway, Benjamin comfortably laying on his hospital bed, waiting for Transport to bring us back to our room.
Back in our room we saw the on-call oncology fellow. He told me that Benjamin's blood counts looked good, still no signs of neutropenia, and that his chest x-rays didn't show any sign of infection. He finished by saying that the Emerg doctor would return with discharge papers and that a nurse would be in to remove Benjamin's butterfly and IV drip.
As we waited Benjamin fell into a light sleep and woke several times crying out and thrashing around before asking me if his line was leaking again. When I'd say no he'd ask me to check to be sure. I don't think he'd noticed how often I'd been checking since the leak, even more often than he'd been asking. The sight of his bloody t-shirt, my first thought that he was bleeding out, rocked me to my core and it may be a long time before I can put that behind me. My hope for him is that that's not the case. Poor, poor kid, he kept whimpering that he just wanted to go home. This was the first time I'd ever heard him say that in the hospital. My heart broke. Again. I wanted so badly to take him home, take off the double masks he was wearing and lay him down to sleep in his own bed.
It was close to 3:30AM that we received the discharge papers and the nurse arrived to remove Benjamin's butterfly. He was beyond the point of exhaustion and was yelling, screaming and kicking his feet against the bed as the nurse removed the large sticker that keeps his butterfly in place. I was holding him and talking to him in a calm voice, telling him it would be out soon and then we could go home. Unfortunately the nurse was unable to remove the butterfly and had to leave the room to get a second nurse to give it a try, prolonging one of the worst hospital experiences for Benjamin. Thankfully the second nurse was able to successfully remove the needle and I was ready with a Spider-Man bandaid.
I lifted Benjamin from the bed and lowered him into the wheelchair, covering him in one of the hospital blankets from his bed. We made it down to the near-empty parking garage and I got us safely buckled into our seats and started driving. In hindsight I'm not sure it was safe to drive being so tired, so emotionally drained and having experienced one of the most traumatizing events of my life thus far but we arrived home safely. As I parked I looked in the rearview mirror. Benjamin was sleeping soundly and clutching the complete collection of stuffed animals he insists we keep in the car. I knew once we went inside I'd have to quietly carry Benjamin up to bed so as not to wake Marvel, Ella and David. There was nowhere in the house I could fall apart without waking someone and so I sat in our parked car with Benjamin in the backseat and cried until I could pull myself together enough to carry my little love inside.