Three Surgeons under one anesthesia

Exactly one week ago, Cole had rod lengthening for his scoliosis. This was exactly one year after getting the rods inserted. During our wait we took a walk around the hospital and noticed a nice new looking hotel called Graduate. All these years we’d been staying at the Hyatt in downtown Cincy because it’s not too far from Cincinnati Children’s Hospital and the area right by the hospital has always been questionable. This trip to Cincy for his airway scope and orchipexy surgery, we decided to try the new hotel located extremely close to the hospital. Typically, Mark and I go with Cole and Lexi stays back with her Grandparents. Cole has never really been a fan of going to Doctors and having surgeries, but post his initial scoliosis surgery he has really started to hate Doctors and surgeries. Lexi, our nine year old daughter, absolutely loves her brother and is empathetic for everything he has to go through. This time she begged to come with us, even though we told her the policy was no siblings due to Covid. Sometimes I wonder how Lexi is so compassionate and loving towards her brother. She had an opportunity to have a sleepover with her cousins and spend the day at the beach. Instead she insisted on traveling all the way to Cincinnati for a same day surgery, no fun at all. We left Tuesday and the five and a half hour car ride was much better with the two of them. Definitely a handful of “are we there yet,” but nothing about going to see the Doctor. We had planned on stopping at a nice restaurant with outdoor eating in Indianapolis, but Lexi was hungry way before we got there so we settled for Cheddars in West Lafayette. It was good food, the drinks were refreshing, and they had a wishing well outside so Cole and Lexi (mostly Cole) helped me get rid of the fifty pennies I had in my car. Lexi would take each penny, make a wish, and strategically throw her penny. Cole would take a handful and just throw them. Lexi was getting so frustrated with him and trying to get him to do it the right way. I looked up on youtube how to sign wishing well and I began to explain to Cole that first he must make a wish and then throw the penny and his wish might come true. Twenty minutes later, he still chose to take multiple pennies and just throw them in. It’s funny to see how different each of my kids personalities are, even though they are raised by the same parents in the same home. We arrived in Cincy around midnight and checked in at the Graduate Hotel. The place was pretty neat with a sleek modern decor, very clean, and free (good) coffee. We hooked up Cole’s ventilor, suction machine, feeding machine, and got ready for bed.

The next morning we got up at 7am to ensure we got to the hospital to check in at 8am. They wouldn’t let Lexi passed the first door. Lexi began to cry hysterically because she just wanted to be with her brother. Mark and Lexi stayed back and Cole and I got checked in. Low and behold, Mark and Lexi somehow made it up the elevators and into same day surgery. That was short lived and they immediately made her and Mark leave. Cole first got weighed, 19.3kg, literally this little guy has been stuck at 42lbs forever, but I remember when he was stuck at 19lbs forever so he is getting bigger. We went to room eleven and Cole had to make sure he looked in every room on the way down the hall. I constantly tell him, if you’re going to stare at everyone make sure if they see you, you wave. When we get checked in and assigned a room we also get assigned a nurse. They have to run his vitals, do a Covid test (yes Cole did it all by himself just like last week), and ask a bunch of questions. Meanwhile during the questioning anesthesiologists, surgeons, etc come in and discuss the procedures. This time he has three separate Doctors; Pulmonologist, Otolaryngologist, and Urologist. All of the questioning and pre-checking in takes approximately an hour and a half or so. Cole gets tons of compliments the whole time he’s in these rooms. Everyone is so impressed with his communication via sign language, his ability to understand everything going on, and they think he’s just the most handsome and incredible little guy (I couldn’t agree more). We had a much different experience, where I was uncontrollably laughing, when the Urologist came in. With a total straight face he walks in and says, “today is New Years Eve the balls are dropping.” Cole, obviously, didn’t understand this but his undescended testes needed to be dropped from his groin to his scrotum. After my good laugh, I discussed with the surgeon how he was going to try and manipulate this with his hands and not do surgery unless he had to. After all the questioning and checking in, I insisted on the Versed again (just like last week) to ensure when Cole went back to the OR with a bunch of strangers, he wouldn’t cry hysterically. This time was different, Versed kicked in much quicker and when the transport team came, it was only one lady and I, actually, walked with her all the way to the induction room. This has not been allowed the last year and a half, due to Covid. Had I know this, I wouldn’t have given him Versed but I was thrilled to go back so no complaints. Nonetheless, I was able to give Cole a kiss right before they gassed him and put him under for all his procedures. They told me it would be two hours so I decided to have Mark and Lexi pick me up so we could go to breakfast at the Taste of Belgium. It’s a good restaurant that has pretty incredible waffles and mimosas. Not that mimosas are important, but they help during these circumstances. We had just placed our order when I decided to take my phone out of my purse. Go figure, I had four missed calls from the hospital. My heart dropped and in a panic I immediately called them back just to find out all receptionists were on the other line. I frantically ended the call and tried to find out why I didn’t hear my phone ring. Of course, I gave my phone to Cole after he had Versed and he changed a bunch of settings, one of them being the volume. Minutes later, although felt like hours, the hospital called me back and said the Doctors were ready to talk to me about his surgeries. We immediately asked to have our food to go and rushed to the hospital. I get to the front desk, out of breath from running and they tell me the Doctors will just talk to me in the post-operative room and that the Urologist was now working on Cole. As frustrated as I could be, I started walking outside to meet Mark and Lexi in the parking lot to go eat my breakfast in the car. I swear, no sooner did I get my hand on the car handle I got a call from the hospital and they said the pulmonologist and the otolaryngologist were ready to talk to me. I immediately jogged back to the same day surgery. I waited in room five until the Doctors came in. The pulmonologist sat down across from me and pulled out the pictures. She began telling me that they were really hoping that Cole had grown over the last year and they would be talking to us about decannulation, meaning taking Cole’s tracheostomy out but that we were no where close. She proceeded to show me pictures of where (throughout Cole’s airway) he has complete collapsing going on. The medical terminology is tracheomalacia and bronchiomalacia. Really what this mean is his airway which is always supposed to stay open, does not and when this happens Cole cannot breath because he is not able to exchange gasses. Which means Cole is not able to inhale oxygen and exhale carbon dioxide. With every word I, literally, felt my heart sinking and I was feeling so many emotions; Hurt, defeat, paralyzed, heartache, grief, anguish, sadness, suffering, and heart wrenching. I sat there listening to every word about no improvement, many many more surgeries and possible heart surgery to pull the aorta away from the left lung cavity. She proceeded to tell me that the upper airway is still very narrow and obstructed and the vocal cords still are unable to pass a 2.8mm scope, but none of these can be surgically corrected until we address the lower airway. In fact, she said they believe that’s why none of the upper airway surgeries have been successful. WHAT?! I, finally, am able to speak and inquire about why we would do all these surgeries if they knew the lower airway needed to be addressed FIRST!! This is where the otolaryngologist steps in and says, well… Most kids just get bigger and less floppy airways as they grow. In fact, we don’t even do this surgery one time per year. Cole is one in a million. Of course, Cole is one in a million! This is what we are told about every congenital anomaly that Cole has. Sleep study, CT scan with contrast, cardiopulmonary bypass, surgery. These are all the things being rattled off to me. Always, Mark is sitting right next to me and not that the news is easier to handle, but at least I feel comfort knowing that my number one support system is sitting next to me and taking in all this information and medical jargon with me.

I felt completely helpless and before I knew it the Doctors were walking out of the room to go about their day. Michelle, the pulmonologist Nurse Practitioner, stayed back and literally walked right up to me and asked if she could give me a hug. That was it, all the tears I was fighting back started to flow uncontrollably. She was crying with me, telling me she was going to pray for her little Cole and she wanted to do something for me. What can I do for you? She asked. I, honestly, had no requests and couldn’t think of anything that could or would help. I explained to her that I just needed good news, I just needed to be able to tell Cole that he was done with Doctors for a little while, that he was getting better, and we had a good plan moving forward. He deserves a break, I told Michelle. How can someone from head to toe, literally have so many things that need to be fixed? How can such a small child endure so many surgeries? How can a Mother continue to be strong for her little guy when he could, literally stop breathing any second of any day and she needs to be there to resuscitate him or he will die? How much longer until things change? Michelle listened to every word and nodded in understanding and empathy as she cried alongside of me. Finally, I mustered up a request. Can you tell Mark everything via phone to ensure I don’t miss telling him something important? She obliged very happily and we called Mark. She told him everything and I could hear Lexi in the background super concerned and heartbroken for her little brother. Mark was taking it all in and then the questions started to be asked. Is this new? Is this the same, but just not getting better? How would the aorta be crushing the left lung? Michelle answered as much as she could and explained the CT with contrast will help understand if this aorta surgery is our next step. On a positive note, they were able to upsize the tracheostomy to a 4.5 Pediatric size with 42MM length. Cole has, his whole life, been in a Neonatal tracheostomy and this means he’s breathing out of what’s equivalent to an adult running and breathing out of a coffee straw. I’m hopeful that this larger tracheostomy will allow him to breathe better and increase his stamina. Michelle committed to checking on how the urology part of Cole’s surgery was going and she  came back a few minutes later and said everything was going well and he’d be in to talk to me in a few minutes. I sat there, by myself, taking in everything I just heard and fighting back the tears so I could understand what transpired and how to best care for Cole post his orchiopexy surgery. The Urologist came in and explained he wasn’t able to manipulate this without surgery. Best case scenario was no scars, next best case was two scars in the groin, and worse case scenario was four scars; two in groin and two in scrotum. Par for the course, Cole was worst case scenario and needed all four scars. I was told tylenol would work just fine for pain relief. My Mom had told me to bring the Oxycodone to ensure Cole wasn’t in pain and just in case. The Urologist took me right back to the PACU to my baby boy. He had just come out of the OR and he was sound asleep. I immediately kissed his forehead and started stroking his head and combing my fingers through his hair. It was taking everything I had to not just bawl right next to his bedside. Mark and Lexi video called to check on us and I showed them Cole sound asleep. Lexi wanted me to wake him up and I wanted to also so I began to do so. He was, initially, irritated but I was able to in 30min or so wake him up enough to get all the stickers and cords off him, the I.V. out, and get him dressed. I, literally, picked him up and we were out. I just wanted to get home and knew that he could just sleep in the car.

As we were driving Mark brought up a noise the car was making. My mind was so drained and I was hurting so bad inside, I told him I didn’t hear anything and simply turned up the radio. Mark, being the rational human that he is, turned the radio down and started accelerating faster and slower to determine what was going on. Finally, he asked me to look up potential issues. I googled it and within minutes Mark and I were pretty convinced it was a wheel bearing. I googled the nearest auto place near me and there happened to be Ken’s Auto just over one mile away in Batesville, IN. I called Ken and he immediately said come on in and he would check it out. He did just this and within 30min he had determined it was the right passenger wheel bearing and he didn’t recommend driving more than 40 miles due to safety concerns. The part, of course, was not in stock in any of the nearby auto stores. We sat outside and Mark tried to come up with another resolution. He called tons of places and finally found the part in Columbus, OH. Approximately 50 plus miles away. I was calling every courier to find someone to deliver it. Long story short, we ended up having Ken order the part for the following morning. Not that I need a reminder, but I was so pleased to have met such a generous, caring, and honest human. I explained to the kids that this man had a parking lot full of cars that needed to be worked on, but he prioritized us. He arranged his worker to take us to the hotel and committed to getting our car completed by 10am the following morning. Cole spent the evening walking around (yes walking even after all his procedures) the hotel on a video call showing his Grandparents the hotel and trying to tell them all about the broken car. Lexi and Mark spent the evening swimming in the pool, in their clothes since no one was prepared with swimsuits. I spent part of the evening on a zoom call for work (yeah on my day off) and the other part starting this blog. Only had a chance to start the blog because as soon as my Mom called to check on me I began bawling telling her all about Cole. We ended the evening with some good Mexican food that Mark walked to get and brought back to the hotel. The following morning at exactly 9:35AM Ken called and informed us that his employee would come pick us up to get our car. It didn’t matter how much they charged us, Mark and I knew we were giving them a huge tip. I still can’t believe the generosity this man possessed and in less than 10min in the car, I was writing the best review I’ve ever left for any company.

Well, here we are driving home… Finally. Luckily, I over packed Cole’s Nourish food so he hasn’t gone hungry because he is only gtube fed and it’s not like I can just get his food at the local grocery store. Cole has told us several times that he hurts and points to his scrotum area. I feel horrible because I was really hoping that the surgeon was able to manipulate this without surgery so I told Cole he was only going for his normal airway scope. He signed to Mark today that he wanted his Dad to kick the Doctor’s butt. I feel like it’s a double edged sword. I could’ve told him all about his urology surgery and created a bunch of unnecessary anxiety and tears if they were able to do it without surgery. However, since they had to perform surgery, he’s left thinking that I lied about what they were going to do and now he’s in pain. We’ve kept up with the tylenol and all in all he’s healing quite quickly.  Our job now is to monitor the new tracheostomy and ensure there are no complications and once it’s all good for a week, we can have Cincy order some more. Fingers crossed for a quick recovery and successful trial with this new tracheostomy.