Seizure Diaries: Quality of Life

Letter to the family, November 18, 2016

Hello Everyone,

I first want to give a big shout-out to Nancy, Leigh, and Joey Caplan for all their help. Thank you so very much for being here with us, when we needed help most.

Health Update

This has been a very rough month for Charlie and me. As of November 18th Charlie has had about 36 seizures: 27 petite mals and 9 gran mals. And we still have 12 days to go. During one of those seizures, the back of his head hit the floor and badly bruised his scalp near his stitches. His head hit the floor hard enough to cause major swelling. Thank God the stitches didn’t come apart! But he had a bump the size of a golf ball on his cut, so I took him to see the neurosurgeon. The doctor told us that Charlie was OK, since the bump was just external swelling. It is extremely tender to the touch.

We scheduled an appointment to see Charlie’s neurologist last Thursday. That visit was for the doctor to program Charlie’s Neuropace for the first time. During the original surgery the surgeon put the Neuropace device in place, but he did not program it to stop the seizures. At this appointment, the neurologist dialed the settings of the Neuropace to a low level so that Charlie can get used to it. We also learned that at this point, the doctors are only setting the device to function on the right side of his head.

We will be going back monthly to get the Neuropace programmed gradually until the team of doctors feels the settings are complete. The Neuropace stimuli will be increased over time and it will be programmed to stimulate the left side of his brain as well. It is a SLOW process, but we still have faith that the end result will give Charlie a better quality of life.

Since the surgery, Charlie has been running a low-grade fever. We believe the fever is due to issues with the anesthesia. Charlie also had a fever in September. His energy level is very low. Charlie has to go slowly, even though he wants to do more. This lethargy is driving him crazy. I try to pace him so that he can sustain his effort on my days off. As an example, last weekend I was doing yard work most of the afternoon and Charlie helped for about 10 minutes. He quickly grew pale in the face. I suggested he sit and watch. He rested for the remainder of the afternoon. He suffered a petite mal seizure. Charlie was able to stop the convulsions with his V.N.S. implant.

Family Update

My son, Curtis, has been sick with viral pneumonia for about 10 days now. He had a set back and saw the doctor again today. He is on three different medications and is having a hard time getting over this one. My grandson also had pneumonia but is feeling much better. I have not been able to see Curtis because if I bring this virus home, and Charlie gets sick, it could be too dangerous for his health due to his weakened state. Curtis’ neighbor is helping him, and his Dad and girlfriend, Britney, get him his food, medicine and anything else he needs and drop them off for him.

Curtis’ second child, my granddaughter, is a “preemie.” She is only four weeks old so Britney and the baby are staying at her mother’s house.

As a mother and wife, I can tell you: I am stressed out and run down. At the same time, I am determined. Things will get better. I still believe that.

Job Update

I wanted to let you all know I am taking steps on my own to get my Technicians Certification. One of our best techs is transferring out of Walmart because of the stress at our pharmacy. I am sad to see him go, but I am glad he won’t feel so beat down any more. The Walmart where I work is not allowing me or any of my co-workers to take the training courses we need to be technicians. I need to log in 120 hours of training by the end of this year. I have not done any yet. I have asked my supervisors repeatedly to go in the back room to train and I am always told, “We are too busy; you can’t leave the floor.” I talked to our district manager about this on Sunday night, when we had a mandatory meeting. Now that he is award of the situation, I am hoping we can all start our training.

I am kind of stuck right now because the Walmart where I work is so close to home. If I need to get home fast for Charlie, I can be there in about 15 minutes.

My long-term goal is to get certified as a technician and to work at the hospital that is being built close to our house. It won’t open until the beginning of 2018, but I still have working there as a goal.

I am sorry for rambling on, but I haven’t been sending any e-mails lately. I have been battling with depression. I withdraw when it hits me. Watching Charlie go through all of this has really hit me hard. I am back on track now.

Charlie has a heart of gold. He shouldn’t suffer so much. I get frustrated and angry with the slow progress. I know we will both see the “light at the end of the tunnel,” but it is hard to walk out that door day after day to work and leave him. Bless his heart. Charlie never complains about his epilepsy. I don’t know how he does it with such a brave face. I am so very proud of him.

Much love to all of you,