*** WARNING: This chapter contains pictures of blood and medical implements ***
It was January 12th, and I had slept for a total of two hours (cumulative), before finally deciding to get up and have a shower at 5:00am. My mind and body prioritized watching Emmett breathe over sleeping. On one hand, nothing had really changed. If anything, he was in better shape than he was before we got here. But on the other, I knew more. I knew what was causing all of his problems now. I knew that with each minute that passed, we were closer to giving him up, with no certainty of getting him back. How can you trust someone with your child's life, who you just met? When the alternative is losing your child, it turns out trusting a stranger is easier than you think.
At approximately 8:00am, a nurse came in and announced that the operating room was ready for him. My face was instantly hot, and I had chills from head to toe. I fought back tears as best I could, but only managed to stay silent as they ran down my cheeks. Emmett was terrified. The look of pure fear on his face was absolutely devastating, and the fact that I couldn't do anything to lessen that fear made it even more so. We put him in a wheelchair, and started walking to the elevator on the seventh floor. Our star nurses, Eugenia and Sabrina, wheeled Emmett down, and Jared and I walked behind them gripping each others hands for dear life. We exited the elevator on the third floor, and walked through two double doors into the family room just outside the OR doors. We were greeted by the entire team - anesthesiologists, neurosurgeons, pathologists and nurses. The anesthesiologists explained the risks involved with being under sedation for such an extended period of time, the most concerning being that because Emmett would be laying face down for so long, there would be a risk of vision issues due to the pressure on his eyes. But they assured us that all possible precautions would be taken to diminish the chances of that happening. The Neurosurgeons explained the order of operations. First, there would be a "halo" fitted to his head and secured to his skull to ensure absolutely no movement during the operation. Next, a drain tube would be inserted in the top right part of his head. This would drain the cerebrospinal fluid that has built up between his brain and skull, as a result of the tumor blocking the chamber in his brain that is responsible for draining the fluid from his brain to his spine. Next, they would make a four to five inch incision starting just below the base of his neck, and would run vertically up to his head. In total, the surgery would take anywhere from eight to ten hours. I gave my phone number to a lovely nurse who would call me every hour with updates from the OR. Then it was time to say bye to Emmett. Jared and I both kneeled down beside his wheelchair, and he was starting to hyperventilate. He was so worked up, that the anesthesiologist had to give him a sedative to calm him down. I told him he was brave, he was strong and that before he knew it, he would be back with Mommy and Daddy. I hugged him tight, I kissed him all over his face, told him I loved him more than life itself, then I got up and threw myself into the open arms of Eugenia, who burried my head in her shoulder so I could let out the sob that I had been holding in for the entire morning. While I did that, Jared had his moment with him in private, while the team of doctors stood to the side, being respectful of our final moments before they took him. At exactly 8:16am, Emmett was wheeled into the OR. By 8:58am, surgery was underway.
After we picked ourselves up off the floor of the family room and regained the slightest semblance of composure, we walked back to the elevator, made our way up to the seventh floor, and settled into our room. My mother and sister came to the hospital, and my Dad stayed behind at my cousin Kelly's house to hang out with the girls. Kelly moved out of her house to give our family a place to stay, and we were (and still are) so grateful for her generosity.
Time moved at the slowest pace imaginable. I looked up at the clock every five minutes, and every five minutes I was shocked to see that only five minutes had gone by. Jared and Brittany played crib off and on and I spent most of the day laying down and falling in and out of the darkness that was my mind. Occasionally, I would be forced to eat or drink something. Every so often Jared would put his headphones on and listen to Emmett's playlist. At the time, his favourite song was "Champion" by Fallout Boy, and the chorus of that song is "if I can live through this, if I can live through this, if I can live through this, I can do anything". This song would become Emmett's theme song throughout his treatment journey.
True to their word, the OR nurse called me every hour with an update. It was a breath of fresh air to know the surgery was going routinely, and that Emmett's vitals were holding up the longer he was sedated. At the six hour mark, it was 3:00pm. The nurse called, informed me that everything was progressing well and he still had another two to three hours to go. She also told me that the next phone call at 4:00pm would be the last, as she had to move to another unit. From 4:00pm onward, I couldn't sit down for any longer than five minutes at a time. I had gone to the unit nurses on the seventh floor at least five times to ask for an update, and they did their best to keep me informed. Finally, at 6:15pm, the nurse walked in and told us that we could go down to the ICU to see Emmett.
Despite being told what to expect as far as Emmett's appearance post surgery, nothing in the world could have prepared me for seeing him laying on that bed. There was my son, shaved head, on a ventilator, tubes and needles hanging out of him, and a drain coming out of the top of his head. I kept forgetting to breathe. It wasn't until I physically touched him and watched his chest going up and down, that I remembered to breathe. There he was, alive, and less a tumor. The intruder was gone. The two Neurosurgeons walked in the room, and Jared and I threw ourselves into their arms. What do you say to two men who started the process of saving your child's life? All we could think of were a million "thank you's". They told us that the surgery went very well, but a very small fragment had to be left behind as it was attached to his brain stem. They reassured us that the size of the fragment was under the threshold of being a cause for concern, and they were very confident that further treatment would successfully kill what remained. Their biggest concern with leaving it in was pride - no neurosurgeon likes to leave anything behind! They left to go home for a much deserved rest.
I leaned over him, whispered "Hi Mama's boy", and his eyes opened. He was trying so hard to talk, but as he tried, he came to the realization that he had a tube in his mouth, and immediately tried to pull it out. Jared and I grabbed his hands and held them down, and called for the nurses. Three nurses came in, and after consulting with the ICU unit doctor, it was decided that they would remove the ventilator tube and see what happens. Worst case scenario, they put it right back in if his oxygen starts to drop. In true Emmett fashion, he didn't need the ventilator anymore. He was breathing completely on his own at full capacity.
As he "came to", he grew more and more irritated. It was a side of him we had never seen before, and we were assured that it is quite normal for kids to feel irritable when they're coming out of sedation. To be honest, it was actually hilarious to see the normally docile and relaxed Emmett turn into a venom-spitting little monster. He was barking at everyone who so much as looked at him the wrong way, even toward his Auntie Shawna, who had flown in from Alberta and arrived at the hospital ten minutes after we walked into the ICU. He looked at her with more of a "oh, it's you" look rather than a "oh!! It's you!!". He had vomited, and once he was done, Brittany told him she was going to wipe his mouth. A corner of the cloth hit his nose, and he had a freak out at Brittany for not telling him that she planned to wipe his nose as well as his mouth. She accidentally deviated from the face wiping plan, and he did not take it well. We had to bury our faces in a pillow on more than one occasion to hide our laughter, strictly for fear of being on the receiving end of his fury. Emmett's biggest bone of contention was the nasogastric tube (NG tube, aka feeding tube) that was inserted in his nose and fed down to his stomach. It is routine to give these to children after major surgery to ensure they are adequately consuming enough food and liquid, should they refuse to eat or drink by mouth. Emmett felt, strongly, that he didn't need it and was very vocal about that. The ICU nurse felt, strongly, that he did need it and was very vocal about that as well, much to Emmett's chagrin. He wasn't a fan of the nurse, and she was more than okay with that.
The Auntie's took over while Jared and I spoke with various doctors and nurses. They walked us through everything that was attached to him and the reasons for it being there. He had a four inch incision at the back of his neck and head that was stapled and covered with a long white bandage. The drain tube at the top of his head was being used to solely drain the spinal fluid from his brain, in an effort to allow the chamber where the tumor was to reduce in inflammation and heal before slowly introducing the cerebrospinal fluid back into his brain to naturally filter through to his spine.
We were told that sometimes, when the brain experiences trauma, it is possible that it can no longer naturally filter and absorb cerebrospinal fluid on it's own, and may need the assistance of a shunt to allow the fluid to flow where it is supposed to. We wouldn't know if a shunt would be needed until the drain started to be raised, and we saw how he was reacting to his brain being introduced to the fluid. It was being gravity drained into a bag that kept a measurement of what was coming out. Dr. W would refer to the draining as looking like a "tequila sunrise", which as you can see from the picture, is not at all an inaccurate description. Over time, the fluid would start to clear up as his brain healed.
Emmett was as settled as he could be, and the rest of us made a plan for who would go where. Brittany and Shawna went to a hotel, and Jared went back up to our room on the seventh floor. Jared brought me a sub to eat, then I made my bed next to Emmett. When I attempted to lay down, his eyes shot up at me and because I was not in full view of him, he was upset. I put a chair next to his bed where he could see me just by opening his eyes, and not require him to move his head. He vomited off and on for the next couple of hours, and finally at 11:15pm, he fell into a deep sleep.
I sat up in bed and stared at him. What, in the actual f*ck, just happened? In the last thirty six hours we went from stomach issues, to finding a brain tumor, to an emergency trip to Halifax, to talking about cancer, to a ten hour surgery. Now, here I was, staring at my eight year old in the ICU, who had been through more in three days than most adults will in their lifetime. I started to go over all the conversations we had with doctors up to this point. The word "treatment" kept coming up, which told me that they didn't need the pathology report back to know what we were dealing with. Shockingly enough, I felt prepared for it. Subconsciously, I knew it all along. My intuition continuously warned me that Emmett didn't have stomach issues, therefore I was mentally ready to hear an official diagnosis. The diagnosis would come in short order - nine hours from that moment, to be exact. Nine hours until our life would be a whirlwind of recovery, treatment plans and trip across the country to save our son's life through some of the most modern, effective and intense treatment available.
Up Next - Chapter 6: Cancer
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