It seems like yesterday, but in reality Cole had traditional rods inserted into his back one year ago, August 2020. When I tell people that Cole had an 89 degree curve in his spine and surgeons have taken it down to a 45 degree curve with traditional rods, people are amazed. The truth is as I stare at Cole, often times, I am beyond amazed and a million things run through my mind. Here we have a seven year old boy that was born without a fighting chance. Within the first eight months of being in the Neonatal Intensive Care Unit, it felt like hourly we got updates on, yet, another congenital anomaly. As important as it is to remember how it all started it’s even more important to reflect on the incredible milestones.
The milestones Cole has persevered through are nothing short of inspirational and the best is yet to come. All of these milestones have come delayed on “Cole’s time” not the typical milestone chart you get from the pediatrician. I would be lying if I said this was easy as a Mother, it’s heartbreaking. Many people may think I handle things so well, I’m called Super Human, Super Mom, inspirational, incredible, etc. The fact remains, I want my children to live their life to the fullest and experience the least amount of pain and the most amount of success. This is what most Moms want! There are times, always ending in feelings of guilt, that I wish Cole was born completely healthy. When I see a newborn healthy baby, when I see a toddler walking with more balance than my seven year old. When I see a preschooler hold a pencil without dexterity complications. When I see a young child talking nonstop telling an exuberant story using their voice and all types of words. When I see a three year old towering over my son in height. When I see a young child eating with their mouth. When I see a small child reading a book. When I see a child playing at the park, running around, with ease. When I see a child with a perfect body not full of scars from head to toe. When I see a child run up and down the stairs. When I see children breathing normal through their nose and mouth with ease. When I see a child without a tracheostomy. When I see a child easily put their shoes on. When I see a three year old totally potty trained when I’m still trying to get my son to realize that his bladder is half the normal size and doesn’t function normally. Meaning he needs to be even more aware with more frequent trips to the restroom. When I see a child playing in the water and swimming without having to worry about getting water in their trach and immediately drowning.
With all that being said, none of this negates the fact that Cole has made incredible milestones and each is celebrated that much more because of where he started and what he must overcome. For all of you medically fragile and/or special needs Mommas out there reading this. Know that it is OK to have these feelings, just don’t stay there and remember to keep it all in perspective! One of the most recent milestones, in the last week, is walking up and down the stairs with no hands. In the past, Cole always needed a helping hand or a handrail to ensure he could walk stairs. He just recently started (very cautiously and carefully) walking stairs with no hands. Also, climbing has always been a difficult task for Cole and he has been climbing on an inflatable slide all summer. It’s an incredible feeling for both of us as I watch him, independently, go up and down the slide. The smile on his face is ear to ear as he climbs up the slide the wrong way. He wants to do everything all the other kids do. He wants to be just like the other kids. As he gets older, he recognizes more and more that he is different and it sometimes breaks my heart. How do I make sure that he doesn’t let his differences define him? How do I ensure he realizes how incredible he is for what he has persevered? How do I ensure others are aware of his differences and embrace them versus judge him? How do I get his big sister to understand that people are mean and not aware of his differences and are going to say hurtful things? How do I get his big sister to not allow these hurtful words to impact her so negatively? I realize I can’t control all of this and it’s a real struggle I battle with daily.
We recently started looking at pictures and other kiddos on “Moms of trach babies” so Cole can see other kids that breath like him and have an artificial airway in their neck. We look at pictures of other kiddos with a gtube so he can see that other people eat this way too. I show him other people who have cochlear implants so he can see others hear this way too. The one he struggles with the most is when I show him other kiddos with scoliosis and rods in their back. Cole is still very convinced he does not have rods in his back. In fact, post appointments, Cole always signs the Doctor broke his back. It’s very challenging to explain to a small child that their spine is curved and without intervention could begin crushing their organs. Doctors needs to continue straightening and lengthening. Cole’s perspective is different. He walked into the hospital, perfectly fine from his viewpoint, and he wakes up in the hospital in pain and not able to walk. The anticipation and anxiety these Doctor appointments and surgeries create is no shy of heartbreaking for all of us. We ensure to always talk to Cole about appointments and try to comfort him. The truth is, no matter how difficult it is, this is Cole’s life for the forseeable future and Doctor appointments and surgeries are a big part of it.
August 4th, 2021 was Cole’s scheduled lengthening. The evening before we get all ready to leave and as soon as we are packing up and Cole realizes Lexi is staying home with her Grandparents, he gets very concerned. I explained that he’s going to the Doctors. This is where the tears, anxiety, and fear kicks in. Lexi was bawling because her heart hurts for her little brother that she absolutely adores. On the way to Cincinnati, Cole spent half the ride asking about the Doctor appointment and reminding me that he doesn’t want to go and he wants to go home. The reason it was only half the ride is because he was sound asleep the other half. We took him to a restaurant in Indianapolis and he enjoyed sitting outside and being waited on. He will purposely drink his water, just enough, so the server has to top his glass off. His personality and sense of humor is absolutely contagious and hysterical. When the server spills a couple drips of water on the table, Cole loves it so he can throw his arms up in disbelieve, sign get it together, and wipe the table with his napkin. These types of episodes at restaurants never get old for Cole. We got back on the road and ended up at the hotel shortly after midnight. We slept a handful of hours and showed up at the same day surgery at 7am. He was the first case and he went right in at 9am, when scheduled, which rarely happens.
Cole has had so many Covid tests that he insists on doing it himself now. The nurse takes out everything and Cole signs Cole wants to do. The nurse gives it to him, he puts it up each nostril, swirls it around like a pro, and hands it back to her. Everyone was completely amazed that he did his own swab. He felt pretty good about himself too. While waiting, Cole told me he needed to go to the bathroom. We walked to the only bathroom I’m aware of in same day pre-OP surgery. We were waiting and after a few minutes Cole said we should see if a different bathroom is open. He literally took me around the corner and there was another bathroom! This kid has been to this place so many times in the last seven years, he can navigate around like a pro. Anytime a child has surgery there are a significant amount of questions that are asked from several nurses, surgeons, assistants, and anesthesiologists. As I answered every question, off the top of my head (with ease) I couldn’t help, but notice how many intricacies are involved in this little guys care and how incredible of a team Mark and I have been and will continue to be for him.
This isn’t brand new to us because Covid has been around a while now, but it’s a very difficult part nonetheless. When Cole departs on a bed with wheels known as a gurney with a bunch of strangers and without his parents. For the last seven years we have walked down those scary halls, right along his bedside, and comforting him the entire time until we get to the induction room where they give him medicine to make him go to sleep. In essence, we are with him 100% of what he remembers. We also ensure that we are immediately taken to the PACU post OR to ensure we are the first people he sees upon waking up from anesthesia. Amongst many other things, Covid has changed this process. Now children are walked down those scary halls without their Mommy and Daddy. Anyone who knows me knows, I avoid unnecessary medication for my children, at all costs. For eight long frightening months, I watched my baby in the NICU fighting for his life and sedated (heavily) almost the entire time while he endured surgery after surgery and test after test. However, the anxiety and fear in his little eyes is real and as a Mommy whose job is to protect her babies, I have to intervene. We give Cole versed which is an anti-anxiety medication and it works to make Cole feel very giggly and after 30min or so very sleepy and creates amnesia. Although I hate to see him drugged up, it beats the alternative of seeing him cry hysterically, struggle breathing since his airway collapses when he gets that upset, and have to walk the other way showing him that I am not there for him when he needs me the most.
Mark and I decided, while waiting this time, we would walk around Cincinnati. Many times we sit in the waiting room anxiously watching the screen, which seems to take days for these procedures to be completed. Walking was the best idea! We talked about the massive changes Cincinnati, especially the hospital, has made over the last seven years and how this is an up and coming City and might be worth investing in. Good conversations, brisk walking, and sight seeing made one and a half hours fly by. Before we knew it, I was getting a call saying his surgery was complete and the Doctor was ready to talk to us. It was perfect timing, we were, literally, at the elevator to go to his floor. We went to door 4 and sat inside the small conference room as we waited for the surgeon. These rooms are not the cleanest, not decorated enough, and honestly not the most comfortable. I’m not sure what I expect, it’s a hospital! However, maybe I think about all these things to avoid from breaking down. We sit in these rooms and Mark and I discuss our questions we want to ask, we take predictions on how the surgeries went based on how long the procedure took, and we just try to get mentally prepared for these conversations. One would think people would get used to something they’ve done so many times for so many years, but when it comes to finding out medical difficulties your baby has to deal with and you have zero control, it never gets easier just gets more familiar. The surgeon comes out and says everything went perfect and as expected. These are words you always want to hear, but rarely do. The surgeon didn’t sit down and looked like he was going to just leave after giving us the news. Of course, he couldn’t because I had questions. As soon as my mouth opened, he sat down. It’s almost like they’ve gotten to know us so well that they know, you can’t get off that easy. So, originally Cole was supposed to have Magec Rods, but his body wasn’t big enough. Will his body be big enough in a year? I ask. The Doctor responds with probably. I then proceed to ask about the recall on Magec rods. If I admitted to people how much research I have done and continue to do on all the medical complications Cole has, people would be astonished. There are many things I can’t control, but educating myself to provide the best care for my son is something I can and will continue to do, always. Magec Rods are really not magic at all. They are simply traditional rods which have a magnet that allows, every three months, a Doctor to adjust and lengthen the rods without surgery. Seems amazing, I know and substantially less invasive and less infection rates because they’re cutting the back open less often. However, the complication rate of the rods themselves failing, breaking, particles falling off, loose screws, amongst a billion other potential problems is very high. In fact, the complications of Magec Rods was so high in United Kingdom that they recalled them just recently. The surgeon explained it was an unnecessary recall and the facts were provided and supported by the FDA in United States so they are not being recalled here, as of now. I talk about decision making in almost all of my blogs and how hard it is to make the right decisions. It’s ironic in the leadership role I have in my career, I make multimillion dollar decisions and although they take thought, analytics, and not always easy they are a breeze compared to the medical decisions I make daily for my son. Maybe it’s a blessing that Cole was too small for Magec Rods. Hard to call something a blessing when the alternative is having an invasive surgery where surgeons cut your back open and you can’t sit up, stand up, and you’re in excruciating pain for days.
Once we talk to the surgeon, we now have to wait until they sew him back up and get him transferred to the PACU. We check on this several times and always ensure that the front desk knows we insist on going back right away. 20 minutes or so later we were headed back. When we got to bed 10, the nurse immediately told us they just gave him dilaudid. He was sound asleep and when I asked why they gave him dilaudid, I was told he was squirming. Cole has, unfortunately, been under anesthesia hundreds of times and he doesn’t require dilaudid post same day surgery. Nonetheless, he ended up taking substantially longer to to wake up, much more irritable, and not oxygenating well. The hospital procedure is to be above 92 o2 and not requiring o2 before discharging. The discharge nurse we had was kind of a nervous wreck with Cole and the fact that he couldn’t hold his sats was making her nervous. At one point, the machine was showing him with o2 levels of 35, but he was pink and it was definitely a falsified reading. After this long, Mark and I can tell what O2 levels he’s at mostly by looking at his face. If he’s not blue, he’s definitely not satting at 35. They ended up making an exception for us and letting us go even though he wasn’t meeting their criteria for discharge. We were comfortable with leaving and the head anesthesiologists was comfortable with us taking him. That’s one nice thing about Cincinnati, we’ve created credibility and they understand and trust that we know our son best.
Cole is about 24hrs post surgery and he’s in horrible pain. Cole doesn’t complain, rarely admits he’s sick, and barely admits when he’s in pain. However, this back stuff is unbelievably hard on him. To make matters worse, Cincinatti had prescribed narcotics for pain and sent me a paper prescription to drop off at my local pharmacy. My Mom tried to drop it off at our local CVS, but they didn’t have it in stock. She drove to the next neighborhood, waiting 25min in line and they only had pill form and not liquid. By this time it was 9PM and we only had tylenol for Cole and that wasn’t cutting it. My heart breaks when I see my kids in pain and I’m not able to help. The next morning I dropped the prescriptions off at CVS and ended up getting a call from them saying they can’t fill them because they need a DEA number. Long story short, hours later I was finally able to get it accomplished and give Cole his first dose. Lesson learned for me, I will always ensure we get Cole’s prescriptions from the Cincinnati Children’s Hospital Pharmacy so he doesn’t have to endure pain. One hour after he had Oxycodone, for the first time post surgery, he was standing and walking around. He did this for approximately 30min or so (just long enough to make cookies with Daddy) and he’s sound asleep now.
A handful hours later Cole got up just in time to roll the dough and use Christmas cookie cutters. Yes, that’s right, Cole loves make Santa, stars, and Christmas tree cookies. He slept alright, but was unable to sit up without assistance, unable to roll over without assistance, and definitely benefited from pain medicine. The following morning, he got out of bed and was up and about the entire day until 9pm or so. He did not complain about pain at all. However, he didn’t want anyone changing his shirt because he was worried someone would touch his back. We ended up letting him do it all by himself and that was more acceptable to him. On day three, literally 72hrs post surgery, Cole was playing on an inflatable slide and walking all over the yard. If someone didn’t know he had just had back surgery, they would have never been able to guess. In just a few days we will be back at Cincy because Cole is having a scope of his upper and lower airway as well as a surgery to address undescended testes. I’m having a ton of guilt for planning the surgeries so close together. He, literally, won’t even be completely healed from back surgery and he will be going under anesthesia again! He doesn’t know yet and the only reason this happened was his scope had been canceled twice due to him being sick. I know, it’s hard to imagine he was healthy for a year and a half during e learning and after 3 whole days of being in person, he was out sick for two weeks. My goal is to be able to articulate and have him truly understand the difference between his surgeries. For example, the scopes he has been getting done several times per year for his entire life. These have never really phased him and he’s never had anxiety or a hard time recovering. His back is something totally different. He now has anxiety and gets so upset over going to the hospital, appointments, or even just xrays. Cole is unbelievably resilient and he perseveres through everything. The best part, he has the greatest attitude through it all.
