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My head is reeling and I'm still trying to understand that today is Sunday. It's been nearly 48 hours since I took my 23 year old daughter to the ER.
The previous Saturday night she had been awakened by a severe headache - it woke her out of her sleep. When the headache continued a couple of days, she went to the doctor. That was Tuesday. She was told to wait until Friday and if it wasn't better they would do some blood work. She was beginning to be really unsteady on her feet and when she got home from the doctor fell down three steps of our stairs.
Wednesday morning the pain was so bad she was vomiting. She called her doctor and they couldn't get her a same day appointment and suggested she get to the hospital. I took her to the ER. They did blood work and a cat scan to make sure there was no brain bleed. She had no fever what so ever and there was no mention of meningitis. They were pretty much looking at the headache as being a bad migraine.
She was then given pain meds and that relieved her headache somewhat. The next step was to do a lumbar puncture. This is an invasive procedure with its own set of risks. Daughter opted to wait until Friday to see her doctor if she was still in the grip of headache. She went home with an anti-nausea medicine and took Tylenol for the pain because there are not a lot of choices for a nursing mother. Her baby is just three months old and she was loathe to disrupt that.
Thursday came and went with headache a bit less during the day but by night I could see her becoming more and more unsteady on her feet. And when she was sitting, her legs were twitching constantly like someone worse than really bad restless leg syndrome. It looked like a neurological problem to me. I wanted to take her to the ER then because she was looking worse than when I took her Wednesday. She said yes at first and then changed her mind. It may have been that it would have cost another $150 for the ER visit. I don't know. I wish I could have gotten her to the ER that night but the best I could do was call my really good psychic friend and ask her for help. My friend said it’s time to get her to the doctor. “Meningitis, they keep saying meningitis.”
So the next morning I took her to the ER. This time she was ready to have the lumbar puncture. It was the only thing that was going to show us if something else was going on in her brain. She also had an MRI to see anything that the CAT scan might have missed. The CAT had been fine Wednesday and the MRI showed nothing unusual but she did come up with high white cell count in the CSF (cerebral spinal fluid) from the lumbar puncture.
We were told that it looked to be viral meningitis. They asked again and again if she had any fever. None at all.
By then, it was 3:30 in the afternoon and we had been in the ER since early morning. I left for 1/2 an hour to pick up my husband from work, then back to the hospital to pick up daughter and baby. They would have been done with all the paperwork by then and ready to go.
When we got back all hell had broken loose. Daughter had been on the phone with her sister when she had what was possibly a seizure.
Daughter had able to follow simple directions right after the seizure but not been able to talk. Also her jaw went out and that is another severe pain issue. They knocked her out with pain meds and then began anti-seizure meds. They had earlier given her a braod spectrum antibiotic in case there was a bacterial component to the meningitis. So the baby could not nurse, plus her mother was pretty much unconscious.
Friday night was one of the longest of my life. I took the 9 pm to 4 am shift in the ICU with daughter. One of her sisters came in a bit after 4 and was there until 10 am or so.
Daughter became combative whenever they did something to her. At one point early on I went to the bathroom and came back to the staff attempting to draw blood from daughter. I heard her from down the hall. She was making short, sharp, shrill cries like a wild animal. It sounded a bit like a rabbit cry. I got to her as quickly as I could and got right up by her head. I leaned in and started talking to her. There were four or five people who had been trying to hold her down and it wasn’t going well. I spoke to daughter quietly, telling her she was safe. I was with her and she would be okay. I stroked her head and hair. I kept talking to her and very soon she “let go” and relaxed back into a deeper sleep. They got their blood draw and after that every time they had to disturb her, they made sure I was there to talk to daughter.
About 4:30, daughters first words were, “I have to go to the bathroom” and she struggled to sit up. Her sister gently but firmly pushed her back onto the bed and told her she could go ahead and go. She had been catheterized much earlier because they wanted an internal temperature.
We were elated to hear her speak any words at all.
Throughout the early morning hours she would rouse a bit from her sleep. At first she asked where she was. Then eventually she was asking why she was in the hospital. Then she was asking how she got so sick. Throughout the day Saturday every time she woke up she a a little more aware. By Saturday night she was off all the monitoring devices and they moved her to a family room where she, her husband and baby could all spend the night together.
Now they think she actually had some sort of combination of meningitis and encephalitis. So not only the meninges were inflamed but the brain itself was involved.
48 hours later I’m having trouble grokking that this is Sunday. And I’m going to go sit in the hot tub, ground and focus on being here now. Cause along with my daughter, I sure was somewhere else during the last 48.
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