Sometimes in life things seem to have happened so long ago. While other times in life it seems to have just happened. Then there’s that whole other feeling that seems so long, but yet just happened. This is where I fall when I think about Cole having traditional rods inserted into his spine two years ago. It seems like it was way longer than two years, but on the other hand, feels like there’s no way it’s already been two years. Tomorrow he will be going for a lengthening and this will be his fourth one. He hates it everytime, but this time he is handling the news way better than in the past. Part of me wonders if he is getting older and more understanding of this just being part of his foreseeable future. Then I realize he is only eight and that’s probably not exactly the reason. Nonetheless, I told him the other night that he was going for surgery Monday and he knows school starts on Tuesday. I told him if he hurts, which we all know he will most certainly be hurting for a few days, he can wait to go to school until he’s ready. He told me he thinks he will hurt until Thursday so he will go to school Friday. He’s probably pretty spot on with that speculation. He also told me he doesn’t love the Doctor and he doesn’t even like the Doctor. I guess with everything this little guy has been through, I can definitely understand.
At this point, Cole is the height and weight of a typical four year old. He is 40″ and 40lbs. In fact, we went to Olive Garden for dinner the night before surgery (Lexi’s favorite place and recommendation) and the waitress gave him a plastic water with a lid and straw. As she handed this to him, he signed this cup, straw, and lid are for babies. I want the same glass as my Mom, Dad, and Lexi. I interpreted for him and the waitress inquired his age. I could tell she was shocked, as is every single person that finds out. I remember staying at the Ronald McDonald House during Cole’s NICU stay and meeting a girl who seemed so smart and strong for her age. I also remember feeling absolutely floored to learn that she was 11 years old and not 4 or 5, which I had assumed. It’s not always easy having such a little guy because of how others treat him. For example, he often times will get treated and spoken to as if he were much younger. People will want to do for him what he should, absolutely, be doing himself. Also, people tend to give him what he wants and a typical eight year old, they would not do this for. In addition, when I reprimand him in a store or in public the way others look at me show they perceive him to be much younger. We were crossing the street this summer and Cole was just waiting, looking both ways, and Mark and I were right behind him but a lady yelled out her window for us to watch our baby!
As I think about others, the sad truth is it’s what’s going to make this life for Cole much more challenging. It absolutely kills me to admit this and I have spent many sleepless nights trying to solve this for him, but the fact remains I can’t prevent it. I can only proactively prepare him for the world and reactively help him through things when people are inconsiderate. You see, having a child with so many medical necessities and so many differences, becomes more and more obvious by how people respond to him. We can not go anywhere without many people staring, asking questions amongst themselves, or saying rude things. At first, I chalked it up to people being just curious and maybe that’s part of it but being curious and being rude are two completely different things. Now don’t get me wrong, we have met some incredible people that have made Cole feel completely typical and have included him but that is not the norm. Usually people stare and you hear things like weird, creepy, and inquiring what’s wrong with him. If only they knew he spent almost his first full year of life fighting every breath in the NICU. If only they knew he has had hundreds of surgeries to keep him alive. If only they knew that plastic apparatus in his neck was called a tracheostomy and without it, even for a minute, he wouldn’t survive. If only they knew he was born with something called arthrogyposis and he has limited mobility in his fingers, arms, and legs. If only they knew his tracheostomy is the size of a coffee straw so he’s out of breath very quickly and doesn’t have the stamina or balance of a typical kid his age. If only they knew he can’t eat orally so he is fed via gtube, but he wants so badly to eat like everyone else. If only they knew he only had one kidney and it functions less than 37% so he can’t have certain medicines, certain foods, has to get blood drawn every six months, and will most certainly require a kidney transplant in his near future. If only they knew that he was non verbal due to an obstruction in his upper airway which doesn’t allow air to pass through his vocal cords. If only they knew that he was profound deaf so he can’t hear a thing, but can communicate extremely well in American Sign Language. If only they knew his bladder is a third of the size as someone else his age so bladder control is much more difficult for him. If only they knew that he could stop breathing at the drop of a hat and need to be resuscitated via an ambu bag. If only people knew that he was compromised and sometimes struggles with gas exchange, meaning breathing in oxygen and releasing carbon dioxide. If only they knew he had a 90 degree curved spine that if not corrected could have started crushing his organs causing death. If only they knew that now he can’t grow how a normal person grows, but a Doctor has to cut open his back every six months to manually expand the rods which equate to centimeters of growth everytime. If only they knew that he desires all the things most kids do and he’s had to try so much harder to do what most people are simply born doing. Most importantly, if only they knew his brain works and he wants to be included and treated like everyone else.
We finished eating our dinner and went home to get ready for surgery day. We pulled in our driveway and Cole taps my shoulder. He asked if I could open the sunroof, turn the music on so he and Lexi could stay in the car listening to music. It was the coolest thing to watch him and Lexi dancing with their heads popped through the sunroof and listening to Maroon 5. I’ve had many people pass judgment on me for implanting my son at such a young age to give him an opportunity to hear. Yes, I know that ASL is a beautiful language and I wish every child was mandated to take this language in Elementary school. No, I don’t believe deafness is a disability. If Cole was born and the only obstacle he had was to learn ASL, I would have embraced this beautiful language just like I have today and, most likely, not even thought of implanting my son. However, when you have a child and from head to toe something is anatomically incorrect and he has so many limitations, I felt obligated to give him just one thing I had control over… Hearing! If that makes me selfish, than I am selfish. I have read about countless kids who have been implanted and never benefited or truly heard. I’ve heard of stories where the child hated it and chose not to wear it so the parents wasted a significant amount of money and their child never benefited from it. I’ve heard of people complain that it caused headaches and dizziness. My thought is this, everyone has their story and I am no one to judge theirs. I can tell you, today, that is not Cole’s story. It was a long road, years of practice, years of ongoing and still going therapy. However, I can tell you without a shadow of doubt that Cole loves his Rondo (hearing aid). He will ask for this every morning, he will want this on all day everyday unless someone is reprimanding him, then he takes it off and turns his head so he can’t hear you or see you sign. His love for music, his love for piano, his love for drums, and even his love for hearing the bathtub running, as he asked for his Rondo just to hear the water running. We played a few songs in the car and soon it was time to go inside to get ready for bed. Cole took a bath, washed with antibacterial soap, we changed his tracheostomy and ties, and fed him. He will be allowed to eat until 6:45EST so we will wake up in the middle of the night to feed him to ensure he doesn’t miss out on too many calories. As it is, he will be missing four meals tomorrow due to surgery and this little guy can’t really afford to miss out on calories. We played and joked around throwing babies and dinosaurs up in the air, listening to loud music, and dancing. Finally, brushed our teeth and headed to bed. Cole is all about schedules and timelines so he had to go through the whole agenda right before he closed his eyes. He signed, first go to bed then Grandma and Grandpa will stay home with Lexi. Mom, Dad, and Cole will drive to Cincy and go to the Doctors for cleaning my back, surgery, and then going shopping and going home. This kid loves to go shopping and honestly, how could he not, when he always walk out of the store with something.
6AM we wake up and start getting all Cole’s medical supplies ready. We always need to remember a backup tracheostomy, a step down tracheostomy, pulse oximeter, ties, catheters, suction machine, ambu bag, feeding pump, food, ventilator, oxygen, his stuffed rottweiler and Jake the Neverland Pirates doll. We prepare ourselves for a long day, but a long day we have grown pretty accustomed too, if that’s even possible. We wake up Cole and he signs he’s all done with the Doctor and he wants to stay home. We explained that we needed to go and as soon as surgery was done we would go home. He quickly reminds me that after surgery we are supposed to go shopping. We get in the car and we start our 336mi, 5 1/2 hour car ride one way that we have done so many times in the past eight years. As soon as we get in the car he needs to go to the bathroom, again, he just went before we walked out of the door. Anyway, we stop at the gas station pick up Mark a red bull, myself and Cole a water and Cole uses the restroom. We make one more stop at McDonalds and we quickly realize that obnoxious time change in Indiana so that egg mcmuffin I could practically taste was not available because even though the truck said it was 9:40AM, it was really 10:40AM at that McDonalds. I settled for a spicy chicken sandwich, but thought of the idiocracy of daylight savings time the whole time I ate. While 3 hours out, I get a call from Cincinnati Children’s Hospital, they explain that the previous case is going to be quicker than expected and is there anyway I could get there at 12:30PM. As much as I wish there was a way for that to happen, as I explained we were three hours out and the earliest we would get there is 1:30PM, 15min earlier than we were planned to be there. We arrive exactly at 1:30PM and we park in the parking lot and grab our stuff and head for check in. The lady checking us in was cute with Cole and I was helping to interpret while he told her no tape for surgery and after surgery he was going to Target. She said she loves Target too! Cole thought it was pretty cool that they both loved to shop at Target. Cole gets weighed and it comes in at 18.7kgs. Every person that walked into room number nine, Cole informs them he doesn’t want tape. Most people have no clue what this means, but as his Mother, I know exactly what he means. After spine surgery, the wound is covered with bandages called mepilex that are extremely sticky to avoid infection of that area. Then everything is covered up with medical tape. This may not seem like a big deal to most, but every single time it’s a huge ordeal, tons of tears, and it makes me so sad to tag team him with Mark to ripe these off quickly. They stay on for one week. Therefore, he was hoping that when the surgeon did this today he could avoid the tape. Unfortunately, the surgeon told Cole that was not an option. They ask all the same questions they ask everyime and I rattle everything off from the top of my head. The nurse, as do all of them, tell me how impressive it is I know everything. I don’t find it impressive, but necessary when you have a kiddo like this. To know what equipment, make, model, size, etc is imperatively important. Cole signs first clean my back, then sleep, then surgery, then shopping, and then home. I sign yes, exactly what the plan is. Now I know there is no way anyone is going shopping after this procedure, but there’s no reason to shatter a little boys dreams when he will surely come to this conclusion on his own soon enough. He won’t let the nurse wash his back so I take the antibacterial wipes and make sure his back is thoroughly cleaned.
Here comes the transport team at exactly 3:05PM to take him back. They asked if he gets upset when we separate and if he needs anxiety meds. I said, we all get sad, but no medicine is necessary. We change him into his gown and he tells me he is ready for going to sleep. I was shocked, he has never told me that before. He was signing putting the mask on his trach which is exactly how they administer the anesthesia. They start to wheel him down the hall and both Mark and I give him a huge kiss and tell him how brave he is and how much we love him. Now usually as they walk away, this is where the tears start coming and he signs and gets very upset that he wants his Mom. This time was different, very different. He twisted his entire body around so he could see us clearly and his back wasn’t to us. He immediately started signing I Love You in ASL. We signed it back to him the whole time until they turned a corner and we couldn’t see him anymore. We get into the elevator and Mark begins to say that he is maturing so amazingly and handled that so well. He looks over at me as I have non stop streams of tears and he goes, well he handled it much better than you. We both chuckle and I try to articulate my feelings. Usually when he goes back to surgery he is so sad, crying, and begging for his Mom. Of course that breaks my heart because I just want to hold him in my arms and be there for him. This time was different, he seemed ok and I still was not. Now I know he’s tough as nails, always has been. However, no matter how tough anyone is, it’s not fair. I’m not one to say things aren’t fair and I’m all about overcoming adversity and making the best out of it. But I have to say, what this little kid has had to endure in his short life is not fair and for this to become his normal is not fair. Mark and I grabbed a quick bite to eat, walked around Cincinnati, and waited for the call to tell us he was done. One hour and forty minutes after they wheeled him into the operating room, they called us to say they were complete. The Doctor meets us and says everything went fine. He explains that next time he will address the bands on the bottom of the rods and replace then with screws. He claims that the last couple xrays showed that maybe they weren’t connected properly, but then when he gets in there things seem to be fine. I inquire about what this entails and he explains that it ends up being more invasive and he will definitely have to spend the night at the hospital. Immediately I ask about the purpose, what will this change? Will you get more growth out of him? If once you get in there everything looks fine, why is this necessary? He states that this has to be done at some point anyway when he has the fusion. The fusion is completed when you’ve gotten all the growth out of someone and they’ve hit puberty and the Doctors make a final fusion. I was so perplexed. Why would something that’s not necessary be done if it’s more invasive, more painful, and requires a hospital stay if it might not even be an issue. I can tell you this, there’s a time and a place for everything. The time and place for that conversation and debate was later. The time was to go see my warrior, Cole and the place was the PACU where he was recovering from surgery.
We get to his bed, number 31 and he was not oxygenating very well and requiring supplemental oxygen. When he did start waking up, he immediately started signing Mom and a nurse was standing in front of him. I took over and he started signing to me that he doesn’t like tape, he has tape, and he hurts. I explained to him that we were going to take the IV out of him and get the monitor stickers off him. He signed we are not going shopping because he hurt. As we were taking everything off him, he was still waking up from anesthesia and he was getting upset. He told me he wanted to stay at the hospital and wanted to sleep there. That’s him just being upset and he doesn’t mean that at all. Meanwhile, the nurse attempted to pull a bandaid off him and he was very upset and pointed to the curtain. I explained to her that he wanted her to go and be outside the curtain. She totally understood and obliged. Mark and I got him dressed and gave him 1.9mm of Oxy to relieve some of the pain to get us into the car. I sat on the wheelchair and he sat on my lap so I could bag him, meaning push air into his lungs to keep his body oxygenating well and letting him relax. We got him into the car and he insisted I sit with him in the back. We lay blankets and pillows on the entire backseat and he lays flat, which is the only way to lay after having your back cut open. We hooked him up to the ventilator and administered oxygen via the portal tank. We left the hospital at exactly 6:30PM so we should be home by midnight.
Here we are, almost 9AM the morning after surgery. Last night was rough! Cole was in excruciating pain, uncomfortable, and unable to move independently. We gave him Oxycodone right before we left the hospital. He had dilaudid at 4PM in the operating room so he was pretty good in the car ride with minimal times needing to be adjusted to increase his comfort level. I carried him in the house, he mustered up a half smile for Grandma and Grandpa and an even bigger smile for the balloons and decorations that were in his bedroom. Lexi immediately came running into Cole’s room to see him. She had made several decorations and just wanted to make sure her little brother was ok. She has her first day of school tomorrow and 11PM is way too late for her to still be awake, but she couldn’t sleep with us not being home. Cole was happy to see her and it made her sad that he told her all about the surgery and how much pain he was in. She doesn’t like to see her brother in pain and hates that he always has so many surgeries. The tough part, well there are many tough parts, is the lack of movement after your back gets cut open. Cole either physically can’t move or the pain is so severe he is nervous to move. Either way every 30min or so, he takes his vent off so it causes a very loud, non stop, alarm and let’s us know he needs us. Mark tries so hard to take care of him and is such an incredible Dad. However, Cole would just cry for Mom and tell him to come get me. It’s pretty typical for children to want their Mommy’s, especially when they are in pain. Heck I still want mine! Nonetheless, I gave Cole Oxycodone again a couple times throughout the night and valium to reduce muscle spasms. It’s so hard to see your baby in so much pain and even when he’s sleeping, I can tell by the look on his face, he’s not comfortable. At 3AM after getting up, probably, over 20 times, I decided to just lay next to him. Not sure if anyone without a vent dependant kiddo can relate, but this is not an easy task. I can’t lay behind him because he, literally, just had his back cut open and you want to keep everything away from his back to reduce the chance of hitting this area. The front of Cole has tubing everywhere. I can’t lay on top of the tubing and there is a huge risk laying under the tubing. I take my chances and I put the peep valve, heated wire, and other cords over my body and I try to snuggle as much as possible with Cole. I could tell he was comforted by this and so was I. I tried to get up and he signed Mom stay here so I ignored the feeling that I had to pee and decided I’ll do that later. Well, what felt like 5 minutes, but was really closer to 30 minutes, Cole needed to be adjusted again to lay on his side. I moved slightly and immediately he started coughing. I knew exactly what happened and fixed it, but man did I feel horrible. The heated wire tubing on his ventilator collects water from the humidification chamber and this, when lifted, can dump into his trach. There are many reason you don’t want water dumping into your trach that leads directly to your lungs. Not only is this dangerous, but just like you and I, if water goes down the wrong tube, it causes you to cough. Well, Cole did exactly that! As you can imagine, coughing is probably one of the most painful things someone can endure right after surgery like his. I felt absolutely horrible and I know I didn’t do it on purpose, but the guilt is not any less. I took this week off of work because I have learned that it’s very challenging on all of us. Luckily, Cole has a nurse that has become much more like family and she showed up right at 8AM. This allowed Mark and I both to get Lexi off to school, her first day of Fifth Grade!! She was nervous and excited all at once. I’m so proud of the young lady that she has become and her compassion and empathy is way beyond her years. I’m sure having a very complex brother with so many medical needs helps her have such a good perspective, but I also believe she was born with many of these incredible qualities. After dropping Lexi off I see my neighbor, we absolutely love their family and even though our families are very busy and don’t always make time, when we do get together it’s always much needed. Well, today was exactly that! I see her and she immediately gives me a hug and asks about Cole. Not sure if I was just overtired, overwhelmed, or simply a healthy combination of both but I just began sobbing. She immediately hugged me tight and said come to my house to float in the pooI and drink sangria. As soon as I walked in the door, she texted me about Starbucks. Little did she know, our Keurig broke this morning and my typical two cups of joe was only one this morning, might also explain the tears. She drops off a large coffee and I head over for some sangria poolside. It’s incredible how sometimes a small act is so huge! She may never know how much I needed her and the impact of her act of kindness. It was just the amount of relaxation and company I needed.
I expected today to be difficult and better for Cole. Difficult because he will probably have a bowel movement and that is always tough the first time post surgery and hurts really bad. Better because I expected him to get out of bed, sit up, and try to move a little. Well, none of that happened. He did sit up two times and was miserable both times and begging to go back to bed. Still no bowel movements. We’ve been pretty proactive with the pain meds and truly hoping tomorrow will be better and he will be making much more progress.