Conor got all pumped full of fluids before, during, and after his heart surgery back in October. When he awoke from the anesthesia we noticed that his right eye was opening fine but his left eye was swollen shut. His pediatrician thought it might still just be from his original birth trauma (he broke his left clavicle and his left side was a bit bruised on his way out) and said we should take a wait and see approach, and that if it wasn't looking normal in another month or so she would refer us to an ophthalmologist. Well, the swelling did eventually go down, though his left eye lid remained a bit droopy when compared to his right. His pediatrician said she was not too worried about it, as it was not covering his pupil at all, so was not likely to impede his vision. However, when we had visitors in February for his blessing, my mom noticed that his pupils were dilated to different sizes. After she pointed that out I did some googling of his symptoms and happened upon Horner's Syndrome. The internet indicated that Horner's is caused by nerve damage and that there were three main culprits that damage that nerve: a broken clavicle, CHD, and neuroblastoma. Conor had the first two problems already, so we assumed that was what it was. At his next check up I mentioned the pupil dilation issues and she referred us to an ophthalmologist who confirmed the Horner's diagnosis.
Because Conor had two of the three main causes for Horner's Syndrome his ophthalmologist originally thought we didn't need to bother with an MRI, as it would be unlikely that he would have a neuroblastoma as well. In fact, the specific surgery that Conor had on his heart (left sub-clavian flap repair) was a huge culprit for the nerve damage behind Horner's and his eye doctor thought that was the most likely reason. However, after consulting with one of his colleagues and several of Conor's other doctors, he decided that since Conor had so many little issues (failure to thrive, eczema, milk allergies, a few sketchy lab reports from blood work, etc) that it would be best to do the MRI after all just to make sure. He said even though it was unlikely that a neuroblastoma was to blame for his Horner's it certainly seemed like there was something weird going on with him.
After he told us he wanted us to go ahead with the MRI we had a bunch of communication issues and basically were unable to contact him for almost three weeks. When we finally got the MRI referral from him and called to set up the appointment we were told the soonest they could get him in was the third week in July, or, smack dab in the middle of our family reunion/nephews wedding planned for the summer. We cut our trip as short as we could in order to get back to have him scanned the first part of August.
Now, I am an anxious worrier by nature, but I had been doing pretty well telling myself that the MRI was just a better-safe-than-sorry thing, and he was not going to have neuroblastoma. I was mostly concerned about him having to undergo general anesthesia to get it done.
Marc dropped us off at Hopkins on the morning of August 8th for the MRI. I had one grumpy little baby boy on my hands since he hadn't been allowed to eat anything after 2:45 that morning. Everything went as planned and a few hours later I was holding my sleepy little babe while he finished coming out of the anesthesia. The doctor came back and told us we were free to go home and that the scans all looked clear, but we would need to follow up with his eye doctor that had put the order in. Later that day the results were posted on Conor's online chart for us to see and the report said that they were "normal and unremarkable". I scheduled his follow up appointment for two days later, and we were so relieved to have that whole mess behind us.
Wednesday morning I was hurrying to get us all ready for Conor's appointment. I had decided to just chance taking all three older kids with me, figuring it would be a fast in and out appointment to go over his all clear results. Right before I got in the shower I checked my email and saw that Conor had a new test result posted on his chart. I clicked the link and saw that it was a new MRI result. I opened that to see that they had indeed found something after all. The words "Imaging of the upper abdomen reveals a rounded, well-circumscribed right suprarenal mass demonstrating intermediate T2 hyperintensity measuring approximately 1.3 x 1.2 x 2.2 cm." jumped out at me. And then, more concerningly, this sentence "THIS REPORT CONTAINS FINDINGS THAT MAY BE CRITICAL TO PATIENT CARE" yelling at me in all caps just like that.
I called Marc at work to let him know and he decided that he wanted to come home and go with me to the appointment. We quickly found someone to watch the other three kids last minute. When Marc got home he asked me to show him the MRI report, so I pulled it up again and saw this sentence that I somehow missed the first time I read it: "Imaging finding suspicious for neuroblastoma or, less likely, adrenal hemorrhage", which, honestly, was quite an upsetting sentence to read.
Man, this story is long, I will have to finish it later. Here are some pictures of Finn and Conor wrestling. Conor thinks it is so funny if I walk him up to Finn and then Finn grabs him and they fall onto the pillow.
1 comment:
Tara 😢!
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