Twas the night before surgery and all through the house, not a creature was stirring...except this Mama Bear.
Once again, I find myself on the eve of surgery. One would think this would get easier. I mean, this is the 15th time I've been here. But honestly, it only gets harder.
If I think back far enough, I can vaguely recall the eve of her first surgery, seven long years ago. She was two and had to have a lot of dental work done due to no enamel on her baby teeth. Because she was only two, the dentist insisted on doing it all at once under general anesthesia. Although a lot of work, "simple" dental surgery was how it was referred. Little did we know that simple didn't exist in Kennedy's world.
We weren't worried so much. Sleep came easy that night for all of us. And that was probably the last eve before surgery that I actually slept. The nightmare started with trying to get her calmed down enough to take the calming Versed. Then watching her be put to sleep. Then fighting with the dentist as she wanted to do more and more as precautionary measures. Then watching as Kennedy woke up. Then waiting to try and get her stabilized. At one point, I sat down in the hallway and just lost it. Due to the idiotic rules, only one parent was allowed in recovery at a time (did I ever mention that my daughter will never have surgery at UNC hospitals again? this is only one of many, many reasons), which meant you were either watching her struggle to breathe or waiting in the hallway not knowing what was going on...neither was fun. They finally stabilized her enough to send her home, only for us to rush back to the ER the next day with a partially collapsed lung. Yeah, simple just doesn't exist in Kennedy's world.
That surgery nightmare gave us a little glimpse of what future surgeries would be like. So when she had her second surgery at age 5, we were ready. Or so we thought. Our parents learned not to wait at home for the all clear phone call, being there is where they needed to be for their own peace of mind. So we filled the waiting room (and continue to do so for every surgery). I prepared Kennedy as best I could, leaving out the part that she would be in a medically-induced coma for three days to avoid the worst pain (telling a 5 year old that they wouldn't wake up for 3 days...I didn't think that was a great idea). I didn't sleep the night before, my mind in overdrive thinking it all through. She needed this surgery to save her life, this I knew. But in the end, this is the surgery where we learned that intubating her was extremely difficult due to her airway anomalies, and that extubating her could prove to be fatal. Luckily we were in a great hospital with a great PICU doctor and they saved my baby. Six more days of life support and medical coma - a lot to survive. But we did.
This is also the surgery where I learned that my time spent sleeping in a hospital could increase dramatically so always be prepared. I finally left the hospital on Day 7, and only because someone convinced me that I needed puppy love. I celebrated my birthday that year in a hospital room. What was supposed to be one surgery and a 5-day hospital stay turned into three surgeries and 23 days...so ultimately I learned to never expect the best case scenario. I can hope for it, but I should always prepare for the worst. And never expect simple.
Then surgery #5 came not even a year after the last fiasco. Again, due to her severe sleep apnea this was another life-saving surgery. Sleep the night before? Ha! Watching Kennedy die was still fresh in my mind (little did I know that those 10 minutes would forever be seared so deep in my memory). Not to mention, we were heading back to UNC hospitals and I was starting to have second thoughts on having surgery there. A "simple" T&A. That damn word again. Thousands of kids get their tonsils out every week and they are home the same day. Leave it to mine to end up on life support for a week, with a collapsed lung and a strep pneumonia infection and two years of constant sinus infections due to it all. I blame all of this on the hospital 100%, but still...no simple here.
Not to mention the other surgeries where intubation/extubation have been difficult, breathing rates have been hard to keep at 100% following surgery, and infections have been rampant...this is where I'm coming from tonight. About four surgeries ago, I gave up even trying to sleep. I read, I watch boring TV, I facebook. And now, I blog.
And tonight I HATE. Yes, it is a strong word but it is the only word that truly describes how I feel on these surgery eves. I hate this syndrome that Kennedy was born with. I hate that Kennedy has to go through this. I hate to make these damn decisions, whether it is life-saving or for quality of life. I hate watching her go through all this. I hate waiting for them to take her back to the OR. I hate having to tell her goodbye while tears are streaming down her cheeks. I hate waiting to hear that she was successfully intubated without a stop in oxygen. I hate waiting in the waiting rooms with others who aren't always respectful of others who are waiting. I hate when they are trying to extubate her. I hate watching her wake up out of anesthesia. I hate all the pain meds that have to be pumped into her as her tolerance to them is high. I hate the allergic reactions that come quickly and then reappear with a vengeance several days later. I hate the night after surgery when sleep is hard for her. I hate hospitals. I hate watching her oxygen for hours, hoping and willing it to stay in the high 90s. I hate the stress that comes with all this. I hate that she has to be so damn strong when she's only little. I hate that I have to lose focus on my other child to get this one through it all. I hate the nightmares that these surgeries bring to Kennedy's nights. I hate that this has to be Kennedy's life. I hate, I hate, I hate.
But through it all, I love. I love that my child is alive due to modern medical technology. I love that we are surrounded by great hospitals and medical care. I love that we have found awesome doctors who care about Kennedy as a person, as a child. I love that we are able to afford the medical care she needs. I love that our families rally and are here for us. I love that my friends never let me down. I love that people pull through and show Kennedy love and support in her darkest hours. I love that I am Kennedy's mom and can help her through all of this while trying to make the rest of her life the best it can be.
There is no comfort to be found tonight. There is no peace to be had. There is no silver lining at this moment. There is no sleep that will come. Those will come tomorrow once surgery is over and we are home. Because truly, my life is good and I am blessed. But for me, this is my night and mine alone (except I'm sharing with you so maybe this isn't entirely accurate). To hate the world. To ask "why me?" and "why Kennedy?" To wonder and wish for better things to come. To play back this journey on rewind and watch it again, making myself remember and revisit things that I don't want to. Because if I have to watch my baby in pain tomorrow, then I only deserve to be in pain myself.
And as always, prayers, well wishes, good thoughts, and positive energy are welcomed. Not sure if it takes a village to raise this child but it takes a village to get me through it.
(NEXT BLOG: I'll surprise you. Not sure yet where to take you next.)
