Valentina’s Origin: Episode VII — The Last Hope
We entered Children’s Hospital thinking we’d finally have a diagnosis to take home with us. People come from all over the world to go to Boston’s Children’s Hospital. While we had just a 3-mile/45-minute drive to get there, it was the final destination for un-diagnosed child illnesses for people all over the country. Our story would end here, but today was only the beginning of the end.
Our meeting with the throat people was across the street from the main building. We first met with a younger doctor and I immediately knew that the bigger guns would need to be called in eventually. He reminded me of one of my good friends younger brother. He’s a sweet guy, but not one that I’d want in charge of a newborn’s diagnosis. As predicted, he had no answers for us, and didn’t say much of anything. He got up to call on bigger (and older) guns.
The main throat doctor was more of what I pictured in my head. He was over 50, had glasses, and just looked like he had seen a few gross throats in his day. He took a long, hard look at your throat and I thought the answer to the puzzle was about to be revealed. But when he looked up from your throat there was a long pause and a hard stare into nowhere. It wasn’t just a “how do I explain this to these peasants” type of stare. It was a “I have no idea what this is, and how do I tell that to these peasants” type of stare.
He spoke eventually, but it was the furthest thing possible from a diagnosis. He didn’t know what it was, though I’m not sure he said those words exactly. His suggestion was that we walk across the street and check ourselves into the main hospital building while they figure it out. At first it sounded like a punt, but as he kept speaking it became clear that this was a marathon and not a sprint. I will try to stick to one sports metaphor per sentence in the future. You’d need an X-ray, a biopsy, and some other fun-for-all tests.
We were instructed to start our hospital journey by going through the emergency room. This was the quickest way to get a room as it was expected that we’d be here for a long time, but I could tell the emergency room receptionist wasn’t thrilled. She knew the emergency route should be reserved for actual emergencies, but since there were no 5th graders with chainsaws in their abdomens (in sight), she let us through via this hospital hack.
The X-Ray and CT Scans were the first and simplest test. It’s also where I discovered my fear of medical equipment. I was anxious to learn the results, but in this case I didn’t always want to see the digital imagery and data that went along with it. While it takes 8 years of college to understand how to read these numbers, it doesn’t stop me from taking my best guess. My default diagnose is bad news so I ended up doing a bit of wandering away from the medical devices when my support was otherwise not needed (or probably, when my support would have been welcome). Neither of those tests showed anything interesting, I was told afterwards.
The biopsy was the most invasive procedure, both to your mouth and to your parent’s schedules. While other tests had results within minutes, a biopsy needs days, and in this case weeks, but this time frame was not known to us yet. The procedure required them to take a piece of your soft upper pallet, which is incredibly sensitive to things like medical scalpers and hot pizza. You were already screaming due to pain in your mouth so your negative attitude towards life in general remained the same.
Once you were out of the biopsy surgery we returned to our room and waiting for someone to tell us what was wrong with you. At one point someone came in and thought the tests showed strep throat, but even I didn’t believe that one. It wouldn’t be something so simple. You weren’t eating, you weren’t sleeping, but no one knew why and the biopsy wasn’t showing anything yet. They didn’t see a reason to keep us any longer, so after around 3 days at Children’s Hospital we were sent home.