It was there they told me that they were concerned he had meningitis. Also not sure if it was bacterial or viral. The spinal fluid was clear from his spinal tap, but no real way to rule it out till it came back negative. So for the time being he was on full precautions. People coming in had to be gowned and masked. The part of this that didn't make sense, I was allowed to come and go from his room. I was able to wander the halls and go to the cafeteria and so forth. Shouldn't I have been a concern.
The good of the precautions... JD had a room to himself! At this point I'm still thinking we are only here for a couple of nights, right!?
After doing some neurological tests on him, meeting with the night doctors, getting an IV started, and all his vitals set. We are finally allowed to settle in for the night, or morning. It's close to 4am. I collapsed on the fold out chair that I moved as close to JD's bed as possible. He was already sound asleep, curled up with Lamby.
How was I to know it was going to be one of the shortest nights yet?
Jumping out of bed at 6am when I heard people coming it. The first people I met was a group of student doctors. And the whirlwind first day at Children's was begun. And boy do I mean a whirlwind! At 9am, the team of doctors came in to discuss JD's case together and with me. Many questions were asked, but I don't think anything ever was answered.
It was at this time we met one of JD's long lasting doctor friends, Dr. Nora. She was not the lead doctor on his case, but she was the most prevalent and always there doctor for him. The lead doctor said I shouldn't worry. He was textbook for Lyme's Disease. I'll be honest, that conversation took me by surprise. I said he tested negative. I keep a close eye on him. And no, he's never shown signs or the standard bullet. She said it didn't matter, he was most likely that. Since they felt it was that possible, and wanted to treat in case it was a bacterial infection, he was put on antibiotics.
The neurological checks done at this time, showed JD a bit wobbly on his feet. I honestly didn't think much of it at that point in time, as he didn't get much sleep. But we were able to get up and walk back and forth. He was able to make it to the bathroom himself, pulling along his IV with him.
At this time, I asked about having Neurology involved. I was told that it wasn't necessary, as they weren't too concerned with it, and it was obviously going to be Lyme's.
Throughout the day, JD was sitting up a bit in bed and playing video games. But as the day went on, I noticed it started losing interest and seemed weaker as time went on.
He was put on a liquid diet, as they were concerned with his mouth due to the droop, or Bells Palsy. So when lunch came, we had a little bit of the jello and liquid broth, but it had no flavor. So JD gave up. He laid down some more and rested. When the lead doctor came back that afternoon, she even came in without her precautions, stating that we know it's Lyme's so why bother. I was feeling very bad that this could have been prevented. But I still felt it couldn't be that. I again asked about the neurology. I said he seemed to be getting weaker. Her comment was "When you're sick, you rest, right? That's what he's doing." Than a comment that will ring in my ears for the rest of my life:
"If I'm not worried, you shouldn't be worried! I get paid to worry, you do not. If you worry more than me, then I have to pay you. I'm not ready to do that!" - just maybe a little more concern should have been had!
My mom came in to spend the day with me at the hospital. My husband stayed out of work to get Ptolemy to school and spend the day with Kaitlyn. That night he brought me a suitcase of clothes for JD and I, along with my computer and blankets. Little did I know, that little bit of home would be my welcomed companion for the next few weeks.
By the end of the day. JD seemed a lot weaker. He also complained more of pain. I asked to get him more pain meds. They said they were find giving it to him as needed.
A long day, a whirlwind of events. Little progress. I was told everything was a sit and wait game, as we had no where else to turn. All his tests were in waiting for news. So we sat it out for night two. I curled up next to my baby again, and tried to let the events go, but they never did.
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