Selective Dorsal Rhizotomy: The Toughest Surgery Yet (Part 2)
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 27 hours post-op and is resting after a 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.
The day after surgery has been very interesting. Due to PICU policy and COVID regulations, only one parent is allowed to stay the night with Mark. Travis went home and in the morning, he was greeted with a very talkative Mark. He wanted to give a play-by-play of the night and cling to Percy, Thomas the Train’s best friend.
It is strange being in the hospital for a number of days. You almost feel like a vampire. When the light finally peaked through our window, it almost served as a reminder that today is a new day, with new challenges, and more opportunities to crush obstacles. It also burned my retinas but, what can you do?
Early this morning, we met with Mark’s Neurosurgery team. They took a look at his legs and are once again thrilled with the results. There is something extremely comforting about having neurosurgery, physical therapy, and rehabilitation medicine being thrilled with the progress. His legs are straight and he can flex his feet. He was given a bath and had fresh sheets placed on his bed. To say that Mark was miserable during the gown and sheets change is an understatement. He was calling out for anyone who would take him home and away from the hospital.
He was also trying to shift his focus a bit. He kept (and continues to) asking for his tablet and some of his favorite shows. For obvious reasons, I am not denying him screen time- sorry other moms. He keeps telling me he wants to poop and for some strange reason he NEEDS to vacuum the hospital floors. For the record, imagine having a conversation with a bed-bound three-year-old about WHY we cannot vacuum the PICU in the hospital. It didn’t go over well. It’s almost like my OCD is shining through him. At least he comes by it honestly.
Mark got to start off the day with a small bed bath, clean sheets, and even got to rock his new paw patrol hospital gown. He experienced a lot of pain with the movements required of him during the bed bath. More movement was required of him when he had to be transferred to a bigger bed to prepare for tomorrow’s events. So it definitely took a lot out of him which is both good and bad. Good because it required sleep, bad because it brought pain on top of fever.
He has been running a fever for most of the day. It started late last night and into early this morning. All of his doctors agree that this is nothing to concern ourselves with and that it is mostly expected, just a small post-op fever. Because of this, we are currently freezing the fever out of him right now. The temperature in Mark’s room in PICU is in the 60s and we slowly removed the blanket off of him. I think that is one of the most difficult things to do- remove comfort.
It is well into the evening and Mark is finally asleep. He has been battling a fever all day. Medication brings it down briefly but it spikes soon after. He has been eating so this is an amazing sign. He’s devoured every applesauce pack I’ve brought, half of a large waffle fry from Chick-fil-a, and a massive scoop of mashed potatoes from the cafe. His appetite coming back is an amazing sign of healing and progress.
Tomorrow is a new day. At least that is what I keep telling myself, Mark, and everyone around us.
**EDIT TO ADD** I understand these types of posts are not the most fluid and may be difficult to read. They are not polished and they don’t have my usual terms and phrases. I wrote these as they were happening- the same day and often into the late hours of the night and into the morning in the hospital. For as much as I wanted to provide a true experience for anyone who may be considering SDR surgery, and the journey Mark and our family must continue on, I couldn’t ignore my responsibility first and foremost is to my son. His care and health take priority over writing about it. I just felt the need to explain myself here.