Before I continue with this post, I have a disclaimer: This article will be broken down into a number of articles over a number of weeks. It involves gruesome details of surgical procedures and will be brutally honest from my point of view. I am writing these in real-time. At present, we are in the hospital. Mark is 96 hours post-op and is resting after another long night. I am making a point to write these now so that we can share our story in its entirety. This is not to promote anything other than hope.

After the formally and forever known as the Night of Terror, we managed to sleep for about 3 hours. In the hospital, it feels more like an hour and a half. Just recapping, last night was super emotional for me, personally. I hate seeing my son in pain. I hate knowing that he can’t really explain the pain, where it hurts, and what I can do to help. This wasn’t a theme limited to just last night. It’s been a theme since I watched him get wheeled into the PICU.

This morning, we were met with Neurosurgery and the Pediatric Rehab Medicine team. We discussed the concerns we had with Mark’s night, including his reaction to the medications. To be frank, Mark complaining of his head hurting threw a red flag straight up in the air. The surgery involved cutting the spine and spinal cord. The concern with Mark was that his headache could be caused by a Cerebral Spinal Fluid leakage. To be safe, it was a collective decision to continue with our care plan. If Mark complains of a headache, we stop the care plan immediately and he returns to his bed, laying flat and having fluids pushed.

Mark had a relaxing morning, minus the medication fiasco. I am pretty sure this hospital stay has ruined my chance at hiding his medicine in his yogurts ever again. My luck. We had to bribe him with ice cream… at 9:00 am. So you can imagine how the next few hours went.

In the afternoon, Mark was having trouble sleeping. Let me rephrase, he was exhausted- but was fighting sleep. 10 minutes after we turned off the lights in his room, we were met with his nurse and physical therapist. The “fun” was about to begin. The truth is, it wasn’t fun. It was hard. It was probably one of the most difficult things I had to witness. I will have to write an article on my personal feelings about that particular event in the near future.

Mark winced in pain when he was scooped up and placed on the side of the bed. He whined when he was placed in my lap as we sat in the chair. His physical therapist moved him to her lap on the floor before she had him try to take steps to Travis. Mark’s legs were collapsing under him. He couldn’t walk, but he certainly tried. He was placed in the chair where he sat for a few moments, playing with his Thomas the Train toy before moving to the stroller.

We took a casual 3 loop stroll around the unit, said hello to the other children who were strolling around too. Mark loved seeing other kids in similar situations. There is a unique bond between children and families in the hospital. As strange as this sounds, it’s almost like a campground. Kids bonding and parents swapping war stories or in our case, surgeries and diagnoses. For some of us, that is one and the same.

After his afternoon stroll, Mark came back to the room and passed out. There was no more fighting. He fell asleep and snored for almost 4 hours straight, without stirring once. He was in such a deep slumber, his nurse was concerned. We had to tell her not to worry that after a long day and a sleepless night, Mark could sleep for hours.

We enjoyed an evening of cuddles and relaxation before going on another stroll around the unit. It must’ve taken a lot out of him because not even an hour later, he was struggling to stay awake. He has been sleeping since 9:30 without much issue. I am hoping that tomorrow is a better day. I keep hoping all of this will be worth it, and not be totally scarring to him.