I arrived at the hospital in the morning and was ambushed by a group of doctors, nurses, and social workers. Out of respect for the doctors who are working to keep Jude alive, I won’t name them and instead will call them Dr. N and Dr. L. When I arrived, the whole gaggle was waiting for me at the door. I barely had time to put down my backpack before they closed in on me.
When I saw the group, I asked to call my sister to join us, as she was on service that day. She has been my support and advocate through all of this and helping me to understand everything going on with my son’s complicated case. She has been constantly wrangling surgeons when I cannot. Dr. N stopped me from calling Ariel and told me it was my sister she wanted to discuss.
Her message was vague and rambling. She started by saying even though my sister is a doctor, she cannot be objective about Jude and isn’t a member of his care team. She went on like this for a while, even saying things like, “After the incident last night, it can be very confusing to have her involved.” At this point, no one had updated me on the previous night's incident.
Slowly her messaging shifted. Rather than Ariels’s inability to have objectivity, she said Ariel was making it hard for the care team to be on the same page. Communications weren’t making it to her.
I stopped her eventually and demanded to hear what the incident was. Jude got worked up, and mucus leaked from his nose and G-tube. Brian said it was worse than he’d ever seen Jude before.
At some point, Dr. L interrupted and wanted to circle back about Ariel. He emphasized that we need one clear person in charge of Jude’s care, a coach, if you will. He encouraged me to ask what Dr. N thinks when folks deliver updates to me. Why would I do this if no one had ever told me that Dr. N was in charge of his care?
Finally, upon pressing, I learned what the bee in their bonnet was. On the previous day, the scope was canceled, and Dr. R communicated with Ariel directly. Apparently, Dr. N was not looped in, understandably, because no one knew Dr. N was supposed to be the “coach.” I had not seen or heard from Dr. N since Jude’s DA surgery on April 7th. I had not seen or heard from Dr. L since I was in antepartum at BIDMC. Neither was at the team meeting on the 19th. No one had communicated with me when my son left the NICU. I’d been struggling for a week and a half to keep up with his care when it seemed like all the doctors, other than Ariel and Dr. R, had forgotten all about him. I’m quite sure that even Dr. N didn’t know she was supposed to be in charge until the previous day.
By the end of the conversation, it was quite clear that they weren't going to walk all over me and convince me that their error was ours. The doctors had failed in their communications. They weren’t keeping track of my son. My sister was the only reason anything was being communicated to me at all. She didn’t want to be part of his care team, she had to be. His care team lost track of him when he left the NICU. The doctors came at me with fuzzy messaging and didn’t take ownership of their own mistakes and instead tried to blame it on me, the mother of the severely compromised infant, and my sister.
Ariel has spoken to both since and brought them to their knees. They messed with the wrong sisters. I never got an apology. I actually haven’t heard from either Dr. N or Dr. L since that day. Ultimately though, I forgive them both. Dr. N performed Jude's first life saving surgery, and saved my sons life. In my book everyone gets a second chance. I know I've had a few.
Later that day, Dr. L came by. Honestly, I’m not sure why. Was he there to double down? Regardless, he saw Jude fall apart and become symptomatic. Brian calmed him down heroically, but nonetheless, it was clear to Dr. L that he should be back in the NICU. He was transferred that evening.