So the next morning (Tuesday, Nov 29th) Katie and I got up, not too early (7ish maybe?) and started the trek to Hopkins. My neurologist had also told me to stop taking all over the counter meds, so I woke up with a headache per usual, but couldn't do anything to get rid of it, so it only intensified through the day. My dad, flying from Massachusetts still managed to get to the ER before us, go figure but we got there around 8:30-9ish. Now for those of you who don't know anything about Baltimore, it's not the nicest city, and while Hopkins is a great and beautiful hospital...it's ER is also not the nicest. They had a very step-wise triage process too. First I checked in. "Reason for visit?" Umm...I had an MRI yesterday that showed a brain tumor. Blank stare. "Why did you get the MRI?" I was having headaches. So headaches became my "chief complaint" and reason for visit...great, that's urgent sounding. It was going to be a long day.
After checking in I waited in the first waiting area for the one and only triage nurse. The one good thing about inner city hospitals though is that there is always great people watching. We did a lot of that today. When I went to see the triage nurse she did the routine vitals and questioning. I handed her my "note" and apologized because I knew this wasn't the kosher way to do things. She agreed with me, told me it would be a long day but that I would likely eventually see who I needed to. I got my note back and was promoted to a second waiting room. First I was called there to complete insurance registration, then more waiting. At this point I got a phone call from Dr. K...just checking to see how I was doing and what I had decided to do. I assured him that I was at Hopkins ER, getting the ball rolling. He has proceeded to check up on me ever since, which I don't mind at all.
An hour or so later I was called back to a room where I met with the ER resident...ahh residents. She was very nice though and while she also agreed that this wasn't the best way to do things she assured me that she would do her best to get the neurosurgery team involved as soon as possible, though it could be a few hours until I saw anyone. She took my MRI and note and sent me off to the third waiting room, the "real" waiting room I guess, with a fish tank, ahh exciting. This waiting room was much more crowded, coughing, sneezing, all kinds of problems. I only added to the fun by starting to throw up, I hadn't eaten anything all morning because of my headache, and had already thrown up once on the ride in (luckily while we were stopped for gas)...but throwing up in the waiting room doesn't get you in any faster either.
At some point I was brought back again and this time met with a neurosurgery resident (the baby neurosurgeon as I called him). He had reviewed my MRI but the attending still needed to see it, and they were having it read by radiology as well. But he was in agreement that there was a large "something" that shouldn't have been there and I did in fact have significant swelling. At this point he also mentioned the possibility of it being an infection and they would run labs for that. But I doubted it, wouldn't I be a lot sicker if I had such a large infection in my head? Maybe not if it had created an abscess but who knows. He told me that I would go have labs drawn and they would start me on steroids (to decrease swelling) and anti-seizure meds (as a precaution). He also said that he was having their neuro-ophthalmology team evaluate me as well. So I left him, had my labs drawn and an EKG done but was sent back to the waiting room without getting any medications.
That afternoon I saw the ophthalmologist and went through the same gamut of testing I'd done the day before. She then told me I had Stage 4 papilledema (out of 5 stages) and she was nice enough to show me images of what that looks like. However I don't really know what an optic nerve is supposed to look like so while it was interesting, it didn't really mean much to me except that I was a 4 out of 5 so it was obviously pretty decent swelling. She told me that if I was admitted she would have me go to their eye institute for a more in depth exam than she could do in the ER. And then it was back to the waiting room...but now with my eyes dilated, great. It was late afternoon by then. Now I understand better why families who come up from the ER are always so drained, frustrated and angry. It is a slow process.
Finally around 8:30ish I was "officially" taken back to the treatment area. I was given a stretcher in the hallway with a wonderful view of the entrance and I was "made" into a patient by being handed the dreaded blue hospital gown. Of course now, 12 hours after arriving, everything turns into a sudden emergency. My nurse was very nice but needed to immediately start an IV for my steroids, apparently she couldn't get them in fast enough. I will give her major props though for being the only nurse to start an IV on me during both my stays that didn't leave a bruise for weeks...and I have great veins! I don't get it. First I got my steroid (dexamethasone), she started explaining why I was getting it, but I did cut her off and tell her I was a nurse and gave dex quite frequently actually. Not to make her nervous or anything, I just didn't feel like learning about dex at that moment haha. Keppra was next, to prevent seizures (had I not gone to the doctor when I did, seizures probably would have been my next symptom, I'm glad I never had to experience that).
At this point we knew I was being admitted, and it was getting pretty late so my dad walked Katie to her car (such a trooper for sitting around with me doing nothing all day) and got the rest of my stuff from her car. Of course this is when the neurosurgeon comes to talk to me. He was very nice, young for a surgeon I thought, but he seemed very calm and confident...but also a little blunt. He introduced himself, Dr. L, and told me he definitely thought I had a tumor, not an infection and it appeared to be about 5-6cm, a little bigger than a golf ball. It was taking up too much space in my brain, the right frontal lobe in particular, and causing extreme swelling which was putting pressure on my optic nerves and causing those to also swell. Then he told me I would need to have surgery to have the tumor removed, and while there are risks with any surgery, if I chose not to do surgery the tumor would definitely kill me. Well that's laying it all out there for you, what choice is there at that point? So, same as the day before, I guess I didn't react a whole lot to this news, and I couldn't think of any questions, just let him do what he had to do. He also told me that since I had been taking Excedrin, which has aspirin in it, that so long as I remained "stable" (ugh that word again) he would wait a week to do the surgery because of the increased risks of bleeding while being on aspirin. But I would be admitted for a few days for observation and to start my meds, and he wanted me in the neuro ICU for my first night. Seriously? I thought, the ICU? I thought he was overreacting a little bit but that's fine. Better to overreact than under.
Since I was going to be admitted to the ICU I got upgraded to a nice curtained "room" in the ER so I could be put on the monitor. What the point of that was I don't really know because all the alarms were off. My sweet nurse also brought me a boxed lunch since I hadn't eaten all day but was surprisingly feeling so much better after the steroids. I couldn't believe how quickly they worked. Also, another weird thing, I could taste and smell all of the saline flushes of my IV...I wonder how many people/kids have that sensation, it's really strange, and it was only the saline flushes, nothing else. But anyways, again we waited, now for an ICU bed.
Till next time! These get too long!