Our last visit (Aug 2021) to Cincinnati Children’s Hospital it was determined that Cole needed a computed tomography (CT) Scan with and without contrast. This Scan is important in determining if the Doctor’s hypothesis that his aorta is crushing his lung cavity is a reality. I went back and forth in my mind weighing the pros and cons of this scan. On one hand I thought, if this scan showed this to be accurate, we would know we needed open heart surgery to move the aorta off the lungs. If this was successful and the cause of why Cole’s airway wasn’t getting better with age, than we could continue all the necessary steps and surgeries to continue our path for decannulation (removal of the tracheostomy). It seems simple and straightforward, but it’s much more complex and time consuming with years of surgeries. Not to mention, there are always obstacles, hurdles, and things we never could have anticipated that come up.
On the other hand, I continue telling myself that even if the aorta is up against Cole’s lungs this has been an issue since birth and rushing to get the news isn’t neccessary. There are a couple reasons I say this, for those who may not understand. First off, Cole has rarely in his lifetime gone any period of time where he didn’t have some type of medical intervention, doctor appointments, blood drawn, etc. Sometimes I look at him in complete awe and wonder how he manages to be so happy, possess such a great sense of humor, and such an incredible will to survive. Perhaps it’s because he doesn’t know any different since he was born with all of these anomalies, but that can’t be it because as he gets older he continues to tell me and inquire about all the differences. Then I think to myself, what if we get this scan and the Doctor’s hypothesis is completely wrong? Now we are in the same wait and see game and still dont know why Cole’s airway is not getting better. With all of these mixed emotions, I was certainly not rushing to get these scans.
However, Cincinnati was all over getting this appointment on the books and the radiology department called me to get it scheduled. I talked it over with Mark and explained how I was in no hurry and perhaps we should just give Cole a break from Doctors for a while… As long as we could, of course. Mark believed it would be best to know exactly what’s going on and the scan would be our best bet to getting that information, so let’s get it done sooner than later. I obliged because that did make sense and I had the same thought when I wasn’t thinking of my many other contrary thoughts.
Here we are, once again for the hundredth time, we stayed at a hotel and got to Cincinnati Childrens bright an early the following morning to check in. This time was slightly different because we didn’t go to floor B3 same day surgery. I could tell that Cole was already relieved and we told him the truth, just pictures this time. We did forego the anesthesia part, not even sure why, but perhaps I was trying to avoid the unnecessary anxiety. We get checked in, we get our room, and the million questions start. They do, or should I say, Cole does his own Covid test and we wait for the results. We begin to put warm packs on Cole’s arm for the IV and of course, Cole will not keep this on and is fighting this. At this point, Cole knows that anytime the warm packs come out, the needle is next. The Covid test comes back negative, ok perfect we should be going in any minute. Nope! The nurse comes in and asks, do you have clearance from Nephrology? Of course I do not because I didn’t know we needed clearance from nephrology. Apparently, the contrast is hard on kidneys and due to Cole’s only one kidney that functions at 37%, this is a concern. The hospital gets a hold of our Pulmonologist (who scheduled the scans) and she admits this is a miss on her part. However, she can’t just admit this without also passing the buck so she goes into this whole lecture about the importance of clinical in person visits prior to any procedure. She proceeds to tell me she has over 700 patients and can’t possibly remember everyone’s specific needs. Now keep in mind in seven years I have not done clinical visits prior to the procedure because we are 336 miles one way from Cincinnati which is 5 1/2hrs car drive one way. So after about ten minutes of trying to make me feel bad that I dont waste three days from school, work, and away from my daughter the Doctor agrees to call the nephrologist and get clearance. After about 30min and no call back, Mark and I begin to call the nephrologist, his nurse practitioner, anyone we could to expedite the clearance. Meanwhile, the nurses and Doctors were absolutely great with Cole and tried to keep him entertained. They would bring in cars, trucks, dinosaurs, and tablets. Cole, of course, found the one toy that needed batteries and didn’t work. He walked in the hall, found the Doctor, and handed it to him and signed this is not working and needs batteries. The Doctor hit the toy a few times and it started to work. Cole was absolutely amazed and came rushing back to tell us the Doctor fixed the toy without batteries. Well, that was short lived and a few minutes later it didn’t work again. Cole, after trying to hit the toy several times, walked right back out to the hallway, found that same Doctor, and explained the toy needed to be fixed again. The banging trick that worked the first time didn’t work again. Therefore, the Doctor had to go find batteries. He did exactly that and came back with a working toy for Cole. Cole was excited played with it for less than 2min and went on to the next toy. After a couple hours of getting no where, I began to lose patience. I picked up all of our stuff and told Mark we were leaving. Mark, in certain circumstances, is more rational than I. He explained that if we just left, they could clear him in the next 30min or so. We would have wasted an evening and and entire day and hotel stay for nothing. I agreed, but still had to get out of there so I went to the car. As soon as Cole saw me getting ready, he was begging to go too. I agreed and he and I went to the parking lot to sit in the car. Keep in mind that at this point Cole had gone over 14 hours without eating or drinking and had been begging for water for hours. As soon as we got in the car, I pulled out his food and gave him water. It’s almost like my mind knew, the trip was a waste and we were just going to go home. Approximately 1 1/2 hours later I called Mark and asked if he had heard anything. He stated no and now he was irritated and ready to leave. Our nephrologist knew it was an emergency and that we were literally at the hospital waiting for his clearance. As I began pulling out of our parking space, Cole began hitting my shoulder. I turned around and Cole was signing, “dont forget about Dad, he’s still in the hospital.” All I could do was laugh and I explained we were definitely not going to forget Dad and we were picking him up right now. The whole thing seriously had my blood boiling, but when Mark got to the car I could tell he was extremely upset. It was my turn to see the glass half full and so I did. Mark sat in the driver seat and I told him to look back at Cole. Cole was literally jumping up and down celebrating as if we just told him he won a trip to Disney World. We didn’t tell him anything like that. We simply told him we were leaving the hospital and his appointment had been cancelled, no pictures today. Cole began to tell me about how the Doctor fixed his toys, got him batteries, and played with him. I couldn’t help but realize that this appointment, as frustrated as Mark and I were, was a needed appointment for Cole. No, we didn’t get any results, no we don’t have any next steps, no we didn’t find out what we wasted over 24hrs to find out. Yes, we paid for, yet, another hotel, took time off work and school but it wasn’t for nothing. It was so Cole could have an opportunity to see Doctors in a different light. You see Cole hates doctors and rightfully so. He doesn’t clearly understand that he is alive today because of Doctors and the medical advancements. All he knows is he gets to the hospital perfectly fine, from his perspective, and when he leaves the hospital he’s in pain, drugged up, and unable to walk. In all these years, I have never seen Cole this happy after a trip to Cincinnati.
Cole took a nap and Mark and I were able to talk. We discussed Cole’s nephrologist and how we’ve never really been a huge fan of him and how we weren’t even confident why all his care is in Cincy, but his nephrologist is at Luries in IL. I think we made that decision based on chronic kidney failure and believing we needed someone local for his kidney. The truth is, every handful of months we take Cole to get blood drawn and it’s brutal. He gets so upset, stops breathing, and its heart wrenching everytime. Mark and I discussed getting him set up with a nephrologist out of Cincinnati. Mark stated if that was the case, we could potentially get his blood drawn (while sedated) during other procedures and Cole wouldn’t even know it happened. I thought, WOW! That’s pure genius. I immediately called Cincinnati and started taking the neccessary steps to make this a reality. There are definitely things in life that suck, circumstances you can’t control, and events that are frustrating and disappointing. One thing Cole has taught me is to control what you can control and make every effort to see the glass half full. We had an option that day to simply complain about all the things that went wrong and how we wasted our time and money. This could’ve and should’ve been avoided, the Doctor made a mistake and should have know she needed to get clearance from Nephrology. We would have had every right to do exactly this and simply complain about the circumstances, but that’s not productive and at the end of the day, it’s not healthy for us either. Instead, we chose to control what we can. We took the steps in getting a new nephrologist, will ease the pain for blood draws for Cole in the future, and we learned to ensure we always have the proper clearance in the future.