Tuesday, April 9, 2013

A Rambling Update

Blogging from my phone for the first time, so bear with me if there are any weird mistakes or formatting errors.  I've never done this before, but I don't feel like dragging my computer out at this hour, and I thought that since I felt up to it, I might as well post an update here.

It's been a very long day. Mom and I both finally got a bit of sleep this morning while stuck in that tiny little ER room.

Ooo, I should start from the beginning. We got to Duke about 2:30 yesterday afternoon. We thought that since a doctor had specifically called us and told us to come get me admitted that we could skip the craziness of the ER (and the $200 copay)...but no such luck. The place was a zoo. We sat in the waiting room for six hours.

The good news is that once we got back there, things moved fairly quickly. I got pain meds. The neurosurgeon was there to meet us as soon as we got in an ER room and was very friendly and detailed. He told us there was still a slim chance the bacteria they found could have just been a contaminant from a mistake made in the lab, so they wanted to retest and make sure before they did anything drastic.

First, they did bloodwork, and that came back normal, so if there is an infection, it's not systemic yet. Once they got those results, they decided to do another shunt flow test tiger another sample of spinal fluid. As Brennan said, yes, that does seem weird because it's another chance for me to get an infection if I didn't already have one, but it's the only non-surgical way to get another sample of spinal fluid to test.

Bacteria takes days to grow in these samples, it took 48 hours for Friday's test to show bacteria, so we still don't know the results yet. Hopefully they will come tomorrow. They started me on some antibiotics as a precaution, though.

We finally got sent up to a real room just before 6:00 tonight, and man, we sure were happy to get out of that ER room.  Even better, God decided to really bless us and grant Mom's two requests: that the room be a corner room (because they're MUCH bigger than all the other rooms) and that it have a good recliner for her to sleep in instead of one of the usual very hard and uncomfortable fold out chairs. We have so much more space.  And I got to take a shower tonight, and it felt AWESOME.

Now here comes to the irritation of the day. I thought that once I turned 18 and officially became an adult, I would get the respect from doctors that I lacked at 16 and 17. They never trusted that I knew what I was talking about, that I knew my body and what worked for me. I thought being a legal adult would change that.

Wrong. Twice in one day, I've had doctors flat out refuse to give me the dose of Dilaudid that I always get, the only narcotic that reliably works for me. The first doctor in the ER first said she wasn't going to give me Dilaudid until I tried lesser stuff, even though the only reason I'd been refusing it was because I know Tylenol and Oxycodone don't touch my pain. After 30 minutes of arguing and me crying, we finally agreed on a combo of two other drugs to see if that would help. But then, the nurse went to get them and she had ordered Dilaudid! Turns out she had looked in my chart and saw that I was telling the truth about a long history of using Dilaudid as treatment. She only ordered half my usual dose, but she did put it in as every 4 hours so I wouldn't have to fight to get it every time.

The guy doc, up here in the real hospital room, was a total jerk when I asked for a second milligram of it an hour after the first. He called 2 mg an addictive dose and said if I can talk and get up and shower and blah blah blah, I can't be in that much pain. That really pissed me off. Dude doesn't know my pain tolerance or my history, and basically all but calls me a drug addict and a hypochondriac in the first two minutes. He threatened to cancel the Dilaudid all together, told me to take Oxycodone (might as well just give me sugar pills) or "deal with it" because I didn't get admitted to the hospital for pain. No, I didn't, jerk face, but since I am admitted anyway, it's not an outrageous request to not want to be in excruciating pain for the first time in six months. Ugh. I love this hospital, but the male doctors have a tendency to be really condescending and arrogant and have horrible bedside manner.

Anyway, the good news is that the doc today said that the cultures should come back tomorrow evening. When they do come back, if they're clear, there is no infection and they'll send a neurologist to my room before they discharge me and I will be out of here by Friday. If the culture has bacteria, I'll have surgery the day after we find that out. After 2009. I never thought I'd pray for them to find something like meningitis, but I want them to find something. I know something is wrong, something has to be wrong, and I just want answers. I want this pain to stop ripping pieces of my life away.

I'm at peace with whatever needs to be done, even surgery. I know I will make it through because I am not alone. The Lord is fighting for me, and I am surrounded by a faithful and oh so loving prayer team of friends who always remind me that they are standing with me. Those two things can do wonders for your spirit.

Here's to hoping for a brighter tomorrow.

(I'll fix the time and date later. I can't get it to cooperate.)

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