Monday, October 29th, started off normal with an early morning walk with a friend. We discussed Eli’s swollen leg, among other things, and mentioned the lymphoma possibility, but wasn’t thinking that was very likely.
Before I get back to the story, I figure I should address the whole Dr. Google thing. No, I’m not a doctor or nurse, but I did train as a CNA and EMT during my college days, while I was a pre-nursing student. In fact, the EMT instructor let me teach the anatomy portion of the class (I had recently studied anatomy off of cadavers). When I was younger, I used to study heart diagrams showing congenital defects, for fun–I was probably in junior high at the time. I took anatomy and physiology in high school and college.
None of this makes me a medical expert, but I do have a basic understanding and curiosity of the human body. I also know how to look for reputable sources of information. However, I also know that all of that does not replace the knowledge and experience of actual nurses and doctors, which is why I seek medical help as needed. I DO like to see if I can accurately diagnose things beyond conjunctivitis and ear infections 🙂
Which brings us to room 26. That is where Eli and I found ourselves after checking into the ER at Primary Children’s Hospital about lunch time. Adam came a little while later, but we’d probably been in the room for 30-40 minutes before anyone came to examine Eli. Once they did come, though, they didn’t stop coming.
One of the first comments: “Wow, that’s a big leg!” pretty much summed up everyone’s opinion. That was the beginning of the same questions over and over again, ever time a new person came in to assess Eli. By the third time he was asked these questions, Eli started to wave them in my direction so I could aswer for him. They mentioned lymphedema, but clearly wanted to figure out what was causing the swelling. Blood was drawn, to Eli’s annoyance, and an ultrasound was ordered. By this time, I was texting a couple different friends to pass the time, including my walking buddy and my friend who spends a great deal of time in hospitals with her kids, who have a genetic condition which results in needing lots of surgeries.
After the bood work and first ultrasound, while still in the ultrasound room, the radiologist came in to look at the images and ask a few questions. He told us he thought it was cat scratch fever (yes, that is a thing, look it up). I was rather incredulous, but know that I don’t know everything. Yes, he’d played with the neighbor’s kitten, but no scratches were infected or anywhere near the swollen leg and lymph nodes. So I asked if there is a test to verify his diagnosis. Yes, there was, so I didn’t bother arguing since they would learn soon enough that it isn’t cat scratch fever. Even our pediatrician discarded that notion a month and a half ago.
That was the first and last time anyone in the ER mentioned cat scratch fever.
The next people to visit room 26 were the oncology team and a patient advocate. Not a good sign. They explained that there were a number of swollen lymph nodes in the left inguinal area, which was concerning. They explained that it could be a result of an infection or malignancy. Eli’s bloodwork showed normal levels, for the most part, with only one thing that was elevated, but not something usually associated with infection. They said they couldn’t know for sure whether it was cancer or infection without a biopsy, but the bloodwork was inconsistent with infection.
They left the room at that point to give us a moment to digest what they had told us. That was when Eli first got a little teary eyed. I saved my tears for later. Part of me still hoped that it coul be something else. They hadn’t found any tumors yet, so couldn’t it be something else?
They continued with other scans while we waited to see if the surgeons had any time to do a biopsy. There was a chest x-ray, CT scan, and another ultrasound (this ultrasound was to make sure that there was sufficient blood flow to the leg). The leg was swollen because a swollen lymph node was constricting the blood vessel going to the leg.
Meanwhile, we hadn’t eaten since breakfast and it was time for dinner, but Eli couldn’t eat in the off chance a surgeon could do the biopsy. When it was apparent that the biopsy wouldn’t happen that day, he still couldn’t eat because of the CT scan, which required him to drink contrast, disguised as root beer.
For awhile they talked about sending us home and scheduling the biopsy later in the week, but eventually the head of oncology and rheumatology called the ER and told them to admit Eli. We finally got a room in the oncology wing about 11pm.
The cost of the day spent in room 26 ended up being about $26,000. Fortunately, our insurance covered most of it.
I wish it had been cat scratch fever.
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