Surgery Sucks

Ro has had two surgeries now and three sedations in his short time here on this Earth. And as much as I thought they would, they don’t get any easier… If anything, they become harder as he gets older and more aware. 

The first surgery was a pretty major one. Rowan has severe ptosis and without the surgery his brain would have cut off connection to the eye causing amblyopia, blindness in one eye. Leading up to it my husband and I went back and forth so much. We were clinging onto a false hope that it would improve on its own with patching alone. 

The night before I don’t think either of us slept. As I laid in bed, sipping a glass of wine I thought would help combat my fears, all I could do was watch our son sleep. With all of the unknowns from genetics to neurology, it makes every single “simple decision” difficult. Besides, I’m the type of person who can’t even pick a restaurant, now I have to make big medical decisions for someone else?! But, that wasn’t our top concern—we were most nervous for anesthesia, and that’s what weighed on me through the night into the early morning hours.

The surgery was successful but the day was filled with many mixed emotions—fear of the outcome, anxiousness for results, anger from his multiple pricks of failed IV attempts, anticipation and excitement to finally see him with both eyes open… But once the feeling of relief wore off, guilt started to creep in. 

Seeing him come out of anesthesia successfully is always a HUGE relief, but the heart-wrenching cry of pain that follows instantly fills me with guilt. He doesn’t understand why mama is holding him down for IVs or why he wakes up uncoordinated and in pain. And in the middle of the night, in a state of sleep deprivation, there is no reasoning with myself… All I feel is guilt for consenting to his pain and I have no better words for him than a continuous loop of “I’m Sorrys.” Thankfully time, healing, and results help us to know we are making the right decisions and the guilt slowly fades away. 

This second surgery this past week has been rough though. At 14 months he now knows he hates needles. He HATES being held down even more and he can squirm around and kick so much harder.

Rowan is now considered a “MH precaution.” Because of his level of muscle weakness and his unknown diagnosis he is considered high risk for having a life threatening reaction to anesthesia gasses as well as succinylcholine, a specific type of anesthesia so he cannot be exposed to them. This means the IV must go in beforehand while fully awake and the room must be specially prepped with all machine lines flushed. The anesthesiologist explaining this to us RIGHT BEFORE surgery was terrifying. 

I need time to process things and sometimes we don’t get that opportunity. This surgery was supposed to be fairly simple. I wasn’t supposed to cry so much this time. Well once again I was wrong in my expectations of emotions. I cried more this time. Holding my fearful baby down while lying in the little hospital bed with him was not something I was prepared to do but it was something I needed to do. 

I guess my point here is there are always things we don’t think we can handle but we just do them without question because it’s what is best for our child. I was his safe place in that moment versus a stranger in scrubs. So at the end of the day I really, really hate the emotional rollercoaster of surgeries but I’m thankful for the medical advances that make them possible. I’m thankful that he won’t remember either of these surgeries when he’s older. And I’m thankful for a husband that holds it all together when I can’t.