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THIS LEXINGTON LIFE

Kawasaki Disease: The Heart Cath

in Baby, Kawasaki Disease, Landon on 17/09/16

52
This Monday is going to be the most difficult day we have faced since Landon’s hospital stay in July 2015. Since his Kawasaki’s diagnosis and treatment, we have been given mostly positive news. His EKGs and Echocardiograms have all come back normal or as expected for a child who is now growing into slightly enlarged arteries. We were able to discontinue the baby aspirin he was on several months ago – a huge relief since this was a compromise to his immune system. And we were released for a year at our last cardiologist appointment, which was about a month ago. “He looks great. He will play sports.” Basically, “you dodged this bullet!”

The next day while working down to the wire on a project for work I received a phone call. The cardiologist was calling to tell me that they were reviewing the ECHO a bit more closely and they saw something that they missed, did I have time to talk? I had literally 2 minutes to talk before my next meeting but I was not about to tell her no. She started talking, I was trying to listen. She said they saw an aneurism on the ECHO, maybe, they weren’t sure. I basically blacked out in that moment while she continued explaining how sorry she was that she had missed this. I was late for my meeting, I was trying to listen to her and understand how I could be getting this phone call, without warning. “He looks great!” … Just yesterday. I told her I would call her back in an hour. I admittedly heard nothing she said- aneurism, heart cath, options. That was as much as I retained.

I called her back but the plan was still a little shaky. Here I am with this new information and not much I can do. It felt urgent, it felt like we needed to make the plan and do this NOW. But I was met with somewhat of a passive attitude. She wanted to talk to the other cardiologists to get their opinion, next week, she’d call me Tuesday with a plan. It was Wednesday when she called. No one called the following week, so I called back. But oh, they had to post pone their meeting until the following Monday because not enough people came to the weekly meeting, sorry! My patience wavered. I am a patient person. But this feels urgent. This feels like hot firey panic. This is an emergency. To me, to Nate, as parents. My baby’s heart is an emergency.

Fast forward, Nate and I finally met with the cardiologists in person two weeks later. Our normal doctor and a second cardiologist that we had never met. He put us at ease, explained a lot – the heart cath is the best option to see for sure what is going on, if there is really an aneurism there, etc. We agreed, we need to know. Landon will likely go back on the aspirin if it is there and beyond that, I am not sure. There was more run around to schedule the procedure. More passiveness. One scheduling person even called me to say that they didn’t have an appointment available until October, but she knew that “wouldn’t make me happy”…… She actually called me to tell me that. And then got me an earlier date in September on a Monday, after they told me repeatedly that they only schedule heart cath procedures on Tuesdays.

A heart cath is an invasive procedure. He will be under anesthesia. It’s … a scary thing. No matter how much reassurance I receive from the doctors or how many articles I read. Yes, against my better judgment, I have looked it all up online – and strangely, I’ve only found encouragement. So, Monday is the day. We will arrive at 6:30AM and be there all day with a possibility of an over night stay.

I am sure everything will be just fine but it is hard to see past the fear of the unknown. It’s hard to find understanding. It’s hard to even comprehend that this is something we have to go through. I try to remind myself that there are far worse things, because there are. I know that. But it feels like this is the worst thing, when it’s your baby- it is the worst thing.

Keep us in your thoughts and prayers.

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