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Hospital Stay

September 14, 2013

I spent three days this week in the Epilepsy Monitoring Unit to have my seizures monitored and assess any changes needed. The monitoring unit in on the pediatric section of the hospital.
It was a nice room, but the bed was designed more for a child than a large adult. I had no idea what to expect with coming off the seizure medication. When I am tired, stressed, or anxious, I get mean-tempered. Great thing to have when people know you’re a Born-Again Christian! I explained my temper to different staff, hoping they all would understand.
My head was wired, and I was plugged into the wall–literally. The cord went 20 feet which gave me enough ‘rope’ to get the bathroom or stand in the doorway and look up and down the hall.
The staff was great, often reassuring, and very good about explaining things. However, I still wasn’t ready for the wiring process. Several staff asked me if I had had an EEG before. I’ve had 3. This one was totally different. The other EEGs were for only a few hours so the leads were simply gelled to my head. The gel was bad enough. It hardened to concrete after it dried. This time the leads had to stay in place for 5 days, so they were fused to my head. Honestly, I’m not certain what they did exactly, but it was noisy (maybe the noise was when they took off the leads; it sounded like a vacuum cleaner). Nothing hurt, so I relaxed and let Bryan do his thing.
After attaching all the wires Bryan wrapped gauze around my head. I then became a member of the “Cotton Top Brigade”. It’s fun being on the children’s ward.
My diet was “Low Sodium” which apparently is code for “no salt, bland food.” My husband ate at McDonald’s and snitched a few packets of salt for me.
They gave me Fat Free Skim Milk to put on my Cream of Wheat. I tried it, but it was like water and ruined the Cream of Wheat. (I still had yogurt, muffin and a banana, so I wasn’t going to starve.) I don’t know why anyone would want to drink that vile fluid. I talked to my sister who explained it was a acquired taste. Sorry, folks, that’s one thing I will never try to learn to like. I’ll stick with chocolate almond milk. I don’t drink regular milk anyway. Put it in something like cereal or pudding then it’s okay.
I tried to work on my computer but their server did not want to talk to my computer with any regularity. I thought I could work on my book, but did very little. It’s hard to concentrate when you’re in pain.
I was discharged on Wednesday due to the insurance; they would cover only 3 days. It’s a shame since today I had a “weak spell” which was one of the things they hoped would happen while I was wired. That morning they changed me to a portable unit. It was brand new to their unit. I took a walk in the hall. It felt good to stretch a bit.
I am doing something very bad. I did not resume my seizure med as instructed. As a nurse I know that is wrong on several levels. However, it’s great to feel normal again. I can wiggle my toes! I can feel my legs! My balance is much better. Several people have told me I sound better; I’m talking faster and don’t seem as confused. My husband thinks I look better–not as drawn and haggard. I don’t have that constant buzz running through my body, but I still have tinnitus. There are so many ways I feel better, it seems almost wrong to go back on the seizure med.
I’ll call my neurologist Monday and talk to him, but I still don’t want to resume that stuff. I’m not sure it’s still necessary. I won’t go into my reasoning at this point, but I’ll keep you posted.

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11 Comments
  1. I am so sorry to hear that you were in the hospital. I am glad you are doing well off the seizure medicine. Keep us posted on how you are doing.

    • The hospital stay was for testing, but I was concerned about abruptly being taken off the seizure medication. Maybe that was the best way to cause a seizure. Unfortunately, nothing happened. The insurance company decided they could cover only three days so there wasn’t enough time to have anything happen. They sent me home Wednesday afternoon; only one night of sleep deprivation wasn’t enough to aggravate the epilepsy. I was supposed to have another sleepless night on Thursday. It’s kind of funny. I was in pain most of the time, and did not sleep well on that bed; it felt like I was lying directly on a plywood frame. I was too miserable to eat. You would think all that stress would have been enough to cause a seizure. On Friday, two days too late, I had a weak spell which was one of the things I was hoping to catch on the monitor. Since I was planning to stay in the hospital until Friday I stayed off the medication until then. I felt guilty about my decision to remain off it and started back on Saturday. It didn’t take long to become wobbly again! Sunday my gait was off, and the tingling was more noticeable. I wrote a poem about being off my medication. I’ll be posting it in the next day or two. Thanks for caring. I appreciate all prayers. I was hoping to get some answers, but it’s doubtful now. Connie

  2. To take it or not to take it – that is the medication question. It is hard to know if the benefits of a med outweigh the side effects. Hope they get things figured out for you and that you can feel good.

    • That is the quandary with most meds on the market. It is surprising to read through the list of side effects; makes you wonder if the med has any benefit sufficient enough to risk taking it. The first seizure med I was on was bad enough, but this one is worse. I called my neurologist, but can’t get an appointment for almost 2 months.

      • Your type of situation is one reason so many people are noncompliant with meds. Good luck getting it figured out.

      • I’ve decided to do a follow-up blog on this. I tried to make an appointment to see my neurologist, but can’t get in until the end of October. I’m supposed to call next week to see what’s available on the on-call schedule. Maybe he’s mad at me because I asked for a referral to get some classes since I needed a better understanding of epilepsy. I may be a nurse and know a lot, but for now I’m the patient and need some answers.

        I thought I checked to follow your blog, but it didn’t show up in my list. I’ve read several of your columns and thought they were very good. I like your phrase “invisible illness”. I should have been following a lot of these health blogs while I was working. They would have been valuable to my home health patients. I am going to reblog several of them. Most blogger don’t mind and I hope you won’t either.

        Take care. Keep your faith strong Connie [quirkywritingcorner]

      • It is a compliment to me that you want to reblog my posts – you are welcome to do so any time.
        I recently changed domains to sensitivetochemicals.com. That may be why you thought you were but were no longer following me. Thanks for the follow.
        I do enjoy your blog. You are right – being a patient is different and it is important to really understand. I think sometimes it is assumed that a medical person understands but medicine is so specialized now that knowledge is general unless you study that specialty (did that make sense?).

      • Yes, you made sense. I’m glad there’s someone else that talks like I do! 🙂

        Early on in my nursing career, I worked mostly 3-11 at a speciality hospital. It was the job, one of many, of the 3-11 nurse to do pre-op teaching. At first I balked at the idea, but soon discovered the patients were easier to take care of when they knew what to expect during and after surgery. (I continued doing that through out my career.) Anyway, one of my patients happened to be a nurse from another hospital whom I had planned to skip, erroneously figuring she did not need my explanation. It was a busy evening as usual and I had 5 or 6 patients to teach. I ran around and gave everyone their explanation, checking each one off my list. When I got back to the nurses’ station one of my co-workers asked me if I had talked to the nurse. I had, only because I had forgot to skip her. I talked to her like I would have with any patient, using simple, non-medical terms. I figured she thought I was the dumbest nurse going. A few days after her discharge a thank-you note arrived and was posted on the bulletin board. I rarely paid attention to the cards. As it turns out, that nurse wrote a lovely thank you note, using my name, about how I had explained everything so clearly. She appreciated the fact that I treated her like a patient and not a nurse because she knew nothing of the whatever her problem was. I don’t remember all the details and I wished I had kept the note. That taught me another aspect of nursing, like you said, a nurse doesn’t know everything and should be treated like a patient.

        Can you tell I’ve turned to writing since my retirement? I can’t seem to make a simple explanation!

        Thank you about reblogging. Most don’t mind, but I do have one that I follow who has everything copyrighted. I will return the favorthat if you want to reblog any of mine, you’re welcome. I’m glad you enjoy my blog. I tend to talk about whatever is on my mind.

        I will look for your other domain so I can keep up.

        Connie

      • Thanks for the permission to reblog.

        I bet lots of people appreciated your educating them. Many people are grateful for the knowledge but are afraid to ask the questions or they just don’t know what questions to ask.

        Keep on writing.

  3. One of my best models had Epilepsy and we worked together for about 5 years so I can appreciate from my time with her just how challenging life can be with E. Glad to hear that the hospital stay was helpful. But hospitals in general are something I’m glad I have been able to stay (generally) as far away from as possible. I’ve had a couple short stays in hospital by my Father in Law was confined for 12 weeks after a botched heart surgery and I have no love for those places or for doctors who seem to live in a world of their own. There’s no end to their poking and prodding. Even after the decision was taken to keep him on palliative care only they were wanting to do (expensive) test after (expensive) test — why? “To Give us More Information” I was told — Yeah, sure, the man is dying and you want ‘more information’ — give it a break!

    I think ‘health’ is such a basic part of our lives — and when something happens to our well being it can come as quite a shock that our ‘plans’ don’t amount to a hill of beans when our body isn’t working the way it should be, or the way we want it to, or the way we ‘planned.’ Do what you can when you can; there sure aren’t any guarantees, and a lot of my high school classmates who had wonderful ‘plans for the future’ aren’t even here to talk about them — much less live them out.

    Prayers for you, and keep up with the positive attitude!!!!!

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