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 56 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.

Today definitely seemed like it was going to be a better day. Last night was smooth and Mark only woke up twice and just for comfort. This was fantastic news. He seemed to be tolerating pain a little bit better. He still had a fever, but it wasn’t much of a concern for the doctors (yet) as both fever and pain were well managed with Tylenol. Mark’s incision had some bloody discharge on it, which was to be expected. As with all things, I remained optimistic, it would get better over time.

Today was supposed to be the day where Mark would be able to sit up in bed. Once he was able to manage this, he was kind of given free rein to maneuver on his own in his hospital bed. It would also give him the chance to stretch out his legs, so to speak. I was so excited to watch him sit up and play with his toys and puzzles. He could eat anything he wanted, drink whatever he wanted, and get to see his room from a point of view that didn’t require him to flip and flop around just to see who is opening the door.

The afternoon was filled with change and chaos, at least in Mark’s eyes. Mark got a new room on the observation unit. He panicked when he was transferred from PICU to observation. I think it settled in that when you get in a rolly crib and move about hospital hallways, things are about to get scary and uncomfortable. He didn’t like being separated from Travis and it caused an even bigger stir (and THAT is an understatement).

Once he made it to his new room, Mark’s bed was raised to a 25-degree angle. He enjoyed snacks like pretzels, cheddar bunnies, and Chick-fil-a fries. Come to think of it, Chickfila was the only thing that he would actually eat without much thought. He was still just as fascinated with his tablet and would give you the death stare if you tried to take it from him.

Earlier in the morning, we noticed some shaking. We assumed it was because he was cold, after all, we lowered his room temperature to the lowest it could possibly go in order to break his fever. It subsided and Mark made his way to a new floor with a new room and a new concern.

“The night is dark and full of terrors.” I think that perfectly summarizes our night. Almost too well, actually. In the evening, the tremors came back with a fever. The biggest concern for everyone was Mark’s sudden and intense headaches. He would grab his head and yell. Mark kept saying ‘Mommy, my head hurts.” Travis tried to test him, fake him out. He pointed to different places on Mark’s head and face to get a better understanding of where exactly hurts. Time and time he kept pointing to the same location. This led to our nurse making an urgent call to the Neurosurgery team.

Neurosurgery reviewed the signs and symptoms and said they determined it wasn’t related to the surgery. This led to our nurse having to make another urgent call to the Rehabilitation Medicine team. After much deliberation, it was thought that these symptoms were Mark’s reaction to the pain. The Rehab Medicine team collectively decided to give Mark some Valium to address the tremors. Fortunately, he was due for his Tylenol too. The fever, headache, and tremors subsided shortly after.

The Rehab Medicine team decided to order blood work to be drawn and urine analysis. It is important to note, Mark has a catheter. He’s had one since surgery. The urine was easy to get for collection, the blood, not so much. Mark has been petrified of anyone and everyone touching his IVs. This is the part where I tell you the real shocker… Mark is part alligator. Seriously, he has the death roll down.

From this point on, Mark went on highs and lows. He refused to go to sleep. In fact, he protested SO much, he decided to test out his new range of motion with ease and kicked the IV out of what used to be his tightest leg. Naturally, it left his night nurse, Katie, and I to clean up bloody sheets with my screaming three-year-old (who was also screaming about dropping his Percy the Train toy on the hospital floor).

As I am writing this, it is 2:18 am. Mark is still playing with his trains (I cleaned them) and will scream, death roll, and make his way to his knees if I take them away. This is a battle that I appear to be losing and I assure you, tomorrow will be even more difficult, yet somehow more hopeful, as we begin working closely with Physical Therapy.

**I also want to take a moment and say that I LOVE Mark’s PICU nurses, Kelsey and Victoria. Their bedside manner has been remarkable and Mark has gotten comfortable with them and seems to respond to them positively. Having people come in and care for your child and treat him like he is a person with his own thoughts and opinions is truly appreciated. He calls them sweetheart and friends and as a parent, you really can’t ask for much more.**