Update ~ Cynthia

(My wife, Cynthia, suffered brain damage during open heart surgery at the Cleveland Clinic in Ohio twenty months ago. This post is our story of her trying to get relief from seizures and the medicines to treat them. See the end of my previous post for more about this.)

On my flight back from Texas, I was seated next to a woman. I thought that she was very attractive and we smiled at each other. We exchanged sentiments about how happy we each were to be going home, and I couldn’t help but notice that she was flirting with me. I tested the waters and flirted back, and enjoyed her warm, genuine smile. This woman had life in her eyes and although I could tell that she was tired from travelling, she was very animated and alive.

I couldn’t help but compare her to Cynthia on our trip to Texas. Cynthia was anxious, apprehensive-but-hopeful, and her eyes were dull and foggy from the prescribed drugs she had been taking for the past twenty months since her open heart surgery.

You are probably wondering who the woman was that I was sitting next to. Did I get her name? Did I do something stupid? The answer is no, I didn’t have to. The woman next to me was Cynthia.

Our week in the epilepsy wing of the hospital was grueling. On the first day she had a state of the art 3T MRI (photo source):

Then we found our way to the epilepsy department and checked in. The obligatory hospital gown followed and a team prepared her for the week of testing. After an RN took a complete history, a young man who was in training to be an Air Force med tech applied EEG electrodes to her head. This would allow the team to record her brain waves 24/7 for the entire week:

The tech uses a sandpaper scrubbie to remove dead skin cells so that the electrodes will adhere better. Ouch!

About half done. You can tell she is getting tired of this by looking at her neck and her clenched jaw...

With all the tugging, pushing, hair pulling and a doosey of a headache; enough is enough.

Then he wrapped her head in a gauze bandage and gave her a fashionable chin strap. A pony tail of wires drapes over her shoulder and connects to a black blue box that is then connected to a 25-foot cable wired to the wall behind her bed, then connecting to a monitor located down the hall. This cable allows her to get to the bathroom but doesn’t allow her to leave the room:

Now we wait.

The doctor and her physician assistant (we liked them a lot) explained that she was going to discontinue Cynthia’s meds so that she would have more seizures. The techs explained that they were going to flash strobe lights in her eyes so that she would have more seizures. And the whole team explained that there would be two nights of sleep deprivation so that she would have more seizures. And more seizures she did have, perhaps a hundred in four days.

This photo of Cyn reading on our Kindle was during one of the sleepless nights. I had a cot right there in Cynthia's room. My job was to pull the covers off of her when a seizure started so that the camera could video her movements.

Caught in a yawn

And forcing a smile behind tired eyes:

The hospital rooms have wi-fi and I was able to keep up with the outside world via our new Samsung tablet. I like it a lot. I've always been a desk top computer kind of guy, learning DOS on my own by reading the DOS list of commands (there was no app for that) back in '84, but now I'm beginning to see the light on portable computing, especially with cloud storage and everywhere access to files.

With the 24/7 video camera, we felt as if we were on a reality TV show. One night I climbed into bed with Cynthia to watch a video via Netflix on the Samsung tablet. About half way through, the tech that was watching us came into the room and said I couldn’t be in the bed because I wasn’t the patient. Liability and all that stuff. So we pushed a couple chairs together and continued the movie, the camera swiveling to our new location. Here’s the camera and the ultraviolet LED illuminator for watching us at night:

The camera is a pan, tilt, and zoom type. At the end of the hall is a room with 16 large screen monitors; 8 screens have the video feed from 8 patients, and the other 8 show EEG activity for each patient. A new batch of patients starts every Monday.

By the end of day three the team had enough information to make a preliminary diagnosis. The team spent the fourth day looking for zebras (potential but unlikely causes for Cynthia’s seizures). On Friday we met with the doctor and physician assistant.

The results of the testing were very rewarding and made the week eminently worth while. It seems that for the past twenty months Cynthia has been misdiagnosed and over medicated with all the wrong medicines. She doesn’t have epilepsy, but rather non-epileptic “events” from a “shower of blood clots” during the open heart surgery.

This “good” news makes us very happy because Cynthia won’t need to be on those dreadful drugs for the next 30 or however many years, and also because she doesn’t need brain surgery to remove pieces and parts of malfunctioning brain cells. Yes!

Now, a very small amount of the correct medicine has already made a world of difference. Although we just arrived home at 3:00 this morning, she is already more alert, happier, and looking forward to living a normal life (is there such a thing?) and getting back to sewing, working with seed beads and hot glass, and working to make our new house a home.

Here is a happy Cynthia on day five getting the electrodes removed, just before being discharged. The glue is a very durable goop and needs a greasy, smelly acetone-based solution similar to nail polish remover. She was an even happier camper after she washed her hair the third time(!):

There is still healing to be done, but now life is again worth living. She is excited and I am ecstatic!

Thinking back to the journey home, I am delighted to have sat next to that lovely woman  on the airplane.

19 thoughts on “Update ~ Cynthia

  1. I’m SO excited about all of this. I’ve been dying to hear what’s been going on and will love to hear more. Such a relief that those meds will not be part of your life anymore!

  2. God bless you both! I am so happy that the problem has been found and you both can have a normal, happy life again. I realize that I am very new to your weblog, but have really been pulling for both of you this past week. I know that God answers prayer and there were a lot of them asked for both of you. Get some rest and I hope to hear more later.

  3. I would like to mention that when we were leaving for Texas, we were saying our goodbyes to Cedelinda (the Panamanian high school student that lives with us), and with tears in her eyes she hugged and hugged and hugged Cynthia good bye. I drove Cedelinda home to her pueblo, and she fought back tears all the way. When we got there, she hugged me and the tears flew, literally jumped out of her eyes. “I don’t know when I will see Senora Cynthia again,” she cried. Our reunion today was no less heartfelt, but instead of tears it was all smiles when we told her the good news. That young woman sure can hug. Then she mentioned everyone in her family, by name, who had been rooting for us this last week.

    Cedelinda also told us that our yardman/house building helper Armando called her and (perhaps after a beer or two) lamented how sad he was that Cynthia had to go through all of this ordeal.

    Both Cynthia and I are deeply touched by the care and love that comes our way from these warm people.

    • Words of thanks seem woefully inadequate for all the encouragement that you, our friends and family, blog-readers included, have been sending our way. But THANK YOU anyway, because I believe that energy of thought and prayer has been instrumental in giving us the emotional strength and support we’ve needed to see this through. A very personal and special note of appreciation to Fred for his unwavering care, love and support. The situation has been trying to be sure. So thank you Fred for everything you’ve done to maintain our momentum in the new house while you’ve been having to care for me too. You deserve a “My Hero” award.

  4. And this came to my personal email:

    Dearest Fred & Cyn,

    I just read the post about your week away. I was so overcome it made me cry. I don’t know what to say, except that I am SO HAPPY that you got this wonderful news. I can’t even imagine how happy you both must be.

    Sometimes that good juju (and an entire team of doctors working around the clock for 5 days) really does work. Can I get a hallelujah?

    Thank the gods.
    Welcome home.

    m.
    xoxoxoxoxoxoxox

  5. So thrilled. The prayers worked. Have a wonderful future. I look forward to more great stories about the woman on the flight, seated next to you.

  6. With all the crazy stuff going on in our little part of the world in Panama, your story makes me Smile and I am So Happy for the both of you…. Cynthia Welcome Back and Congrats,,,
    Sandy Coleman

  7. I just read this post and and shared it with Randie and we are so happy to hear that all went well. We can’t even imagine what it must have been like for both of you to go through this experience. The way you described your experience on the plane was magical!

    We are back in Canada now and look forward to seeing you both when we return to Panama in the fall.

    Many Blessings!

  8. try CBD oil made from marijuana for her issues. she will not get high, at all, but she will stop her seizures almost entirely! read about it on the net before you say it’s silly, like your Dr’s…
    nothing toxic like what she’s ingesting now.

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