Hey extraordinary humans, today’s story is about my extraordinary human, Cameron, and the monster abscess in his spine.
Cameron has emergency spinal surgery
Andy and I stood beside his hospital bed after his operation, and I cried silently. He was in intensive care. I wanted to say I was afraid that he would never walk again. I said it one hundred times in my own head, but I couldn’t utter it out loud. I wanted to say it to Andy, unburden myself, but I just couldn’t get the words past my mouth. Neither of us said it. I could see his little toddler body in my mind, walking, running, playing, pretending, and feel him slipping away. It felt like the boy born from my own body, perfect as he was, would be gone.
Relief came. Only hours after the surgery he was lifting his arms and legs during neurological checks, when his nurse would rouse him from sedation to check his responses. He was heavily sedated, his moans the only clue to his pain. They weaned the sedation and he was alert, even smiling once and awhile. He shouted, “mommy” when I walked into the room.
The next thing was to see if he could go to the bathroom on his own. The pee came easy, but we all waited anxiously for his first poop. So many of the parents at Ronald McDonald House were waiting for poops! Good news finally filled the diaper. Joy came when he sat on the edge of his bed and laid down to sleep for the first time. For nearly a week he had been sitting in a fetal position, unable to lie down, stand up or walk. Sitting on the floor playing Lego for the first time, I felt so grateful.
And then on day six, he finally stood and took his first steps. I was walking him down the hall of the acute care unit with his physical therapist, when Andy turned the corner and saw him on his feet for the first time. I teared up seeing Andy celebrate, and Andy cried tears of relief and happiness.
Our nightmare turned into the best days of our life, when our stubborn little Cameron pulled through and a full recovery seemed possible. None of it mattered since Cameron was okay. Every day and every night was hard, but Cameron was okay. We were burned out, but Cameron was okay.
We all have hopes and dreams and plans. And for the most part they go awry in some way or another. When you think you are at your limit as a parent, as an earner, as a partner and friend, sometimes you have to dig deep and give even more. And when you have done that and think its time for a break, to coast, just for a little while, life takes even more.
Here’s what happened…
On March 15, 2019, Cameron had surgery for an inguinal hernia. As part of the procedure, the doctor gave him a caudal block, which is kind of like an epidural, to help with his pain after surgery. That was Friday.
On Saturday, we had a great day. Cameron started his day taking teeny, tiny steps and holding his tummy and ended the day running around the hockey rink with his best buddy like the happiest kid in the world. I had to be mean mommy and said he couldn’t jump down from the bleachers since he had just had surgery. He was tucked into bed by Grandma and Grandpa while Andy and I were at the symphony.
By Midnight, he was awake with a fever, complained that his back hurt. Sunday, a doctor at our clinic found an ear infection. His hernia repair looked fine. Off we went with our antibiotics. Monday, we had a cranky guy. Said he had a headache. On Tuesday, he went down for a nap in the late morning and when he woke up, he didn’t want to walk or stand. Our little dude wanted to be carried everywhere and seemed to be in a lot of pain. He was drawing his knees up to his tummy. He just kept whining and saying, “my tummy hurts.” Back to the doctor.
This doctor examined everything and said he looked fine. I thought he wasn’t managing the post-operative pain well and asked about different pain medications. There was nothing to be done but wait. Wednesday, he still wasn’t walking and now he couldn’t bear to be moved or touched. Over and over now, the familiar refrain, “my tummy hurts.” He was admitted to hospital and after nearly a week of investigations for appendicitis and meningitis, the pediatrician found an abscess in his spine by MRI.
During his caudal block, his epidural space was inadvertently infected with MRSA, the super bug Methicillin-resistant Staphylococcus Aureus. The abscess had expanded from L3 & 4 to C2 in his spine, basically from his neck to his bottom. There was so much pressure on his spinal cord and nerves, that he couldn’t walk nor move his body, and his bowels had stopped working.
The intensivist said all this pressure would have felt like sciatic pain, but everywhere. His poor little body must have been on fire. I think he must have felt like he was dying, wondering why he was in so much pain in a life when he had been so lucky until now. He was a little soldier, powering through. He submitted to everything the doctors and nurses asked of him. He screamed through the process to get him sedated and lying correctly for his spinal tap. Andy, tortured by having to hold him down for the medical team. Me, crying outside the door, witness only to the sounds of his screams while I stood over our newborn, Braden.
After the MRI revealed the interloper in his spine, Cameron was transported by air ambulance to Saskatoon for emergency surgery.
The waiting neurosurgeon explained all the risks to Andy and moments later, Cameron was in surgery. The doctor removed part of five vertebrae and drained the abscess. He spent the next couple days in pediatric intensive care, on infusions of Fentanyl and other powerful medicines.
Our new life at the hospital felt too normal too fast. And it isn’t over. We made the journey back to the General Hospital in Regina to start six weeks of intravenous antibiotics. Last week we were able to go home. The nurses taught Andy how to give the IV antibiotics through Cameron’s central line. So every six or eight hours, depending on his current dose, Andy sets him up for an hour on an intravenous pump.
Some things are still normal. Cameron is back to all his old tricks, running, riding his balance bike and making silly jokes. You wouldn’t know he just had spinal surgery. The stitches have dissolved out of the 6-inch incision in his back. When I cuddle him and I run my hand there, it shocks me every time. I forget that its there, marring him. But it is also the evidence of the life-saving work of the doctors who operated on him.
Andy was with Cameron day and night in the hospital for so many days. He didn’t leave his side, even to get breakfast. He saw every blood poke, witnessed every tube go in and out of Cameron, his NG, his catheter, his nasal prongs, the intravenous lines. He saw Cameron cry and say, “owie” before he was even touched as he was approached by a nurse or doctor for a procedure or an exam. For the worst of it, Andy had to sit under Cameron, supporting him in the fetal position. Only getting a break after a dose of morphine when Cameron would doze off and he could slip out to go to the bathroom.
I was torn between caring for our newborn and sitting vigil with Cameron. At one point, they thought it was meningitis, and suddenly I couldn’t bring Braden to his room in case he was contagious. How was I supposed to choose between my two-month old and my three-year-old?
It’s a relief to have a partner you can trust with the tiny humans you love most, but it doesn’t make it any easier to leave your baby in the hospital every night. And to struggle through the morning routine with his brothers in a hurry to get back to the hospital. Luckily we had family travel to Saskatoon with us to help out with Dominic and Braden so that we could be with Cameron.
We’re soldiering on
In our house, we’re still grieving the loss of my sister. We’re three months into having three kids in the house, all of them five years or younger, and we’re managing our budget while I am on maternity leave and starting a business. And here we are, managing with even less sleep, less money and less time to do what is required while we care for Cameron. But we are doing it. It’s not without help. We owe so many good people our appreciation for their time and attention, not to mention the many gifts we received.
Reading this story now, Andy and I can’t help but feel that it doesn’t express the gravity of what happened. But how can words do it justice?
When I cuddled Cameron, tears streaming down my face, while we waited for his ambulance, he said, “It’s okay mommy.”
Life calls on all of us to stretch beyond our means and our limits to do something we never thought possible, or to power through a situation we never want to ever face. And we must rise to it. There can be no question. That’s moxie, the ability to competently respond to adversity.
Cameron is already back to terrorizing our household with his relentless energy. I am so thankful for his moxie. I hope he comes by it honestly, from mom and dad, because we sure need it.