It’s hard to believe that one and a half years ago Cole had rods put in his back to address his 89 degree curved spine. In some ways it feels like the surgery just happened. Perhaps that’s the part of me that can’t help but get a little sad everytime I see the massive scar that starts at the top of his neck and goes all the way to the top of his butt. However, there’s another part of me that feels like it was many years ago. Perhaps this is due to the incredible resilience Cole shows towards such an intensive, painful procedure. I’ve said this thousands of times and it still holds true, I would be laid up in bed and needing some serious pain pills to get through what this kid overcomes on a daily basis.
This time we tried something different prior to Cole’s surgery. When I say we, I mean, Mark decided on his own that he would tell Cole about going to the Doctor before school one morning several days before the actual surgery. I was taken by surprise. The last time Cole got such bad anxiety going to the doctor, literally, was the only thing he talked about. However, this time was different. Cole was definitely not happy, but he seemed slightly more accepting of it. Or he simply headed off to the bus and didn’t give it another thought. He’s pretty amazing with his school nurse and she’s pretty incredible with him too. This may seem to others like no big deal, but it’s absolutely huge. When you have a child that cannot be their own voice, they need an advocate. Mark and I are do our absolute best advocating in every aspect of his life. However, when he’s at school we can’t be there. I can honestly say, I wouldn’t want anyone different accompanying him than his nurse, Susie. It’s an amazing feeling knowing when we can’t be his voice, we have someone who deeply loves him and always has his best interest. That evening after school, Cole asked me about going to the Doctor. I’ve explained to Cole hundreds of times that he has a curved spine and they needed to insert rods to prevent this from getting worse. In addition, I have shown him tons of pictures, xrays, and other kids with scoliosis. He has adamantly responded with, Cole doesn’t have rods in his back. I get it! You can’t see it and it’s a pretty hard concept for someone (especially a child) to grasp. I decided to try something a little different. I drew a line dividing a piece of paper. On the left top side of the paper I wrote Lexi’s spine and on the top of the right hand side I wrote Cole’s spine. There’s one thing for certain about Cole, he adores his sister. She doesn’t always think so because he purposely annoys her, but deep down inside Cole idolizes her. I proceeded to draw what Lexi’s spine looks like, a straight line. I then pointed out and drew a big zero showing she has no rods. We then went to the right side of the paper under Cole’s spine and drew a curved spine and 2 rods. I even showed him the four nuts that the Doctor has to unscrew every six months to lengthen the rods and then screw tight again. After ten minutes or so, I asked Cole to make a similar picture. He obliged and did it, almost, exactly as I had shown him. The coolest part was he totally understood the four nuts that needed to get unscrewed to make the rods longer and then tightened again. On a number of occasions, I’ve attempted to get Cole to tell others (our family) what he has had done on his spine, hoping this would help him. However, he’s never wanted to discuss it and always responded that he’s all done with Doctors. The next day, I asked him to draw this picture again, he did and he totally explained it too. I have since had him do this, at least, ten different times for many different people. He enjoys making the picture and explaining things and it seems to help him understand such a complex topic for such a little dude.
February 7th was his surgery date and the OR time was almost four o’clock EST. Mark and I typically spend the night with Cole the day before because he has always been a morning appointment and it is over a five hour drive. However, with it being so late in the afternoon we decided to simply leave the morning of his surgery. We left at 6:30AM CST and we got to Cincinnati earlier than needed. Cole was such a rockstar, no tears. He was such a tough guy at the house prior to leaving and Mark asked him if he wanted his Jake doll or dog or anything in the car with him. He insisted on bringing nothing and continued to reiterate, he was not sleeping at the hospital overnight. That’s one thing that Mark and I feel very strong about, not staying at the hospital. First off, with all Cole’s medical complexities I wouldn’t even dream of leaving him at the hospital without Mark and or myself. Every surgery they book Cole an overnight room, just in case, but we always bring oxygen, the ventilator, ambu bag, and everything we need to take him home. Cole does better at home and so do we. During the commute, multiple times he told his Dad that something was forgotten at home and Mark should go back home to pick it up and then we can go to the Doctor. Nothing was left at home and that was simply Cole’s way of trying to avoid the inevitable. Since we were early, we took Cole shopping. It’s kind of funny, but Cole loves to go shopping. I’m not sure if it’s because for the first handful years of his life, he never really had the opportunity. Or he just thinks it’s pretty dang awesome to control something in his life and what he puts in that cart, is totally up to him (within reason) of course. Cole chose two wooden horses to paint, one for him and one for Lexi. He also chose orange paint, what a shocker, this kid loves the color orange and can never get enough. He wanted to buy Lexi pink paint, but we have enough pink paint to paint our entire house. In addition, he got two blank canvases for him and his sister and a surprise egg. As we are paying he taps my leg and signs, will this make Lexi happy? I could seriously cry tears of joy with how much this kids aims to please. He’s so concerned about other people’s happiness and wants everyone to be happy. Here we are taking him shopping because he’s hours away from getting his back cut open and he’s concerned about his sister’s happiness. Empathy at its finest and he’s only seven years old! Cole knows that Lexi is always sad when we have to leave for Cincinnati. She always wants to be with Cole, but these appointments are hard on her, she can’t go in because of Covid, and she needs to be in school.
We arrive at the hospital and get checked in. Of course, being in a childrens hospital we see plenty of wheelchairs. Everytime Cole makes a big deal out of it and starts guessing what happened. That girl fell and broke her leg, not good, Cole signs. I try to simply tell him that sometimes people need a little extra help and it’s not a big deal. For whatever reason, wheelchairs, crutches, walkers, and other assisted contraptions get his attention. We wait prior to surgery, as we’ve done now hundreds of time, for each and every nurse, doctor, and assistant to come in and ask a ton of questions. We wait for the anesthesiologists and Mark very astutely reminds them that no dilaudid post surgery and discuss the dosages of fentanyl. It’s incredible and most people think he has some type of medical background with anesthesia. However, it’s simply Daddy experience. He has seen the good, the bad, and the ugly. Since he has an understanding of what drugs and dosages work best, he advocates for Cole everytime. You would think, one and done. However, that is simply not the case and everytime we do not thoroughly go through this, a mistake is made. Cole absolutely hates this procedure and when the Doctor walks in to get his consent form, Cole immediately signs no. This particular surgeon is used to kids hating him, after all, in their eyes they come into the hospital perfectly fine and leave in pain. Part of me wonders if he is ever phased by the treatment he receives and then I quickly remind myself what incredible success he has and I’m sure these success stories help him sleep at night.
Due to having an xray (several weeks ago) that showed Cole had atelectasis he would need to be seen by pulmonary first in the OR prior to his spine surgery. Our family had all gotten Covid around Christmas time and all of us (luckily) only had minor symptoms. However, a month later Cole was not exchanging gases well, meaning inhaling enough oxygen and exhaling carbon dioxide. This was the reasoning for taking him to get an xray. I’ll never forget that day. We took him to an urgent care and the radiologist was not onsite. Therefore, after the xray we went home and waited for Cole’s pediatrician (on-call one that had never met him prior) to call with results. Hours later, well into the evening, I get a panicked call from this on call pediatrician that states the radiologist recommends he immediately be hospitalized. I know what many of you may be thinking, when a Doctor says go to the hospital, you go. I get it and eight years ago if this had happened, that’s exactly what I would’ve done. However, after (almost 8 years) of being Cole’s Mother that’s not at all what I did. I had questions, lots of them, and the on call Pediatrician was not able to answer all of them so she called the Radiologist and called me back. The truth of the matter is this, Cole is extremely medically complex. When someone reads his medical records (the hundreds of pages) they are shocked and scared. This leads most medical professionals to steer any and all concerns to a children’s hospital. The radiologist was concerned that with the amount of white out the xray showed, Cole could go into respiratory failure and not make it through the night. Mark and I, fortunately, know Cole better than any medical professional out there. We also know that if the amount of lung collapse was as severe as the radiologist was describing, clinically it would be shown. Cole actually went to school the day we took him to the urgent care to get the xray, if he was that bad off, he never could have gone to school.
The following morning I simply followed up with his pulmonologist out of Cincinnati Children’s that has known Cole since birth. When I spoke to her she already had the xrays in her computer and was laughing about the radiologists recommendation. She stated verbatim, “You and Mark are not average parents and you’ve become unbelievably knowledgable pertaining to Cole’s care. I can honestly tell you, I would take your word in regards to Cole over any professional.” This statement from her almost had me in tears. It hasn’t always been like that. In fact, I will never forget when Cole was in the NICU and there was a new attending Doctor that wanted to break the code and diagnose Cole. She wanted to do a CT scan to rule out Kabuki syndrome. Cole’s pulmonologist, Mark, and I had just had morning bedside rounds and determined we would reduce the ventilator setting and start weaning down due to his progress. Low and behold, the Doctors all get together (without the parents) and come back to us less than 2hrs post the morning round to discuss increasing pressure settings and CT Scan to check for Kabuki and brain function. I was, literally, furious here we are (once again) following directions of a brand new attendee who has known Cole for less than 24hrs and has the authority to change the entire direction of his care. Long story short, he didnt have Kabuki and we ended up reducing some of the ventilator settings. So, again, to say that her comment almost had me in tears is because I think of where we started and where we are today. Mark and I had many uncomfortable conversations, a ton of disagreements, and an opportunity to advocate at its finest for our little guy. At the end of the day, we established the credibility needed to really make a difference in Cole’s medical care. My number one wish would have been he didn’t have any of these obstacles to overcome. However, that’s not an option so my next wish was to become the best advocate possible and a resident expert on our son’s medical needs. Mark and I have completely achieved this and then some. The pulmonologist and I decided that when Cole came in for his spine procedure, they would also use that OR time to clean his lungs out during a scope procedure.
It’s that time! All nurses, Doctors, and teams have come in asked all their questions and got their consent paperwork signed. The transport team comes and we start wheeling Cole to the OR. We walk down this long hallway and right before we get to the doors, they say you need to give your good byes because you can’t go any further due to Covid rules. Cole immediately starts freaking out and signing Mommy and crying. I could go through this one million times and it gets harder everytime and I can’t help but get so emotional. I should absolutely be allowed to hold my son while they administer anesthesia so the last thing he sees prior to going to sleep is me. It shouldn’t be that he gets taken back with complete strangers and doesn’t see me until he’s awake again.
Mark and I go to the waiting area and we decide to go grab some lunch. They always tell you to not leave the hospital, but we’ve done this enough times to know that we have plenty of time to go offsite. Psychologically it’s better for us and the times goes faster. We stop at a pizza bar place and I have a pretty amazing hard cider. I wish I could recall the name, honestly, I can’t remember. What I do remember clear as day is Mark getting a call from the Doctor saying we got off to a later start and we should be done in an hour and a half. Soon after, definitely not and hour and a half, he gets another call saying that they’re closing Cole up. Minutes later we get a call from the Doctor saying they’re done. We, literally, slam our drinks, take another big bite of food and leave way more tip than necessary because we don’t have time for change. We both jog to our car so we can quickly get back to the hospital. When we arrive, we go into the room where we wait for the Doctors to come in and tell us how things were. First the pulmonologist comes in and explains that Cole has a lot of obstruction, narrowing, and she got out as much mucus as possible but couldn’t get too far down. Next the spinal Doctor comes in and explains everything went as planned, he got approximately 2cm of growth and we will see him again in six months.
We had learned our lesson from the last lengthening and made sure we got Cole’s pain meds prior to him even going into surgery. We were super prepared to just head out of the hospital. We immediately asked the nurse to remove his IV and I began getting him dressed. He was not even fully awake and we took him out of the hospital. He slept most of the car ride, peacefully, and we got home in time to kiss Lexi goodnight. It may seem like a long day and it definitely was, but I’ll take a long day with no complications over a short day with any type of complications. I find myself more and more being grateful for what I have and not complaining over what I do not have.