Image result for neuropace


Seizure Diaries: Proving He Needs Probes

Hello, Everyone,

I hope you all have had a wonderful summer. I wanted to touch base with everyone about Charlie.

The most recent four appointments that Charlie has had at Penn State Hershey Hospital included a very intense M.R.I. (it took 1 hour and 45 minutes) and a CAT scan. We spent a lot of time talking with the doctors and staff. We talked to the Neurosurgeon, who will be doing the upcoming tests, and also to one of the docs from the Anesthesia department. I was glad to be able to pull aside the nurses. I talked to the nurses in the unit that will be taking care of Charlie during his upcoming hospital stay. They guided me on how best to use my Family Leave.

As I understand it, the Neurosurgeons are going to drill two small holes into Charlie’s skull. Then they will navigate a robot which will be inserting many probes into the surface of his brain. When he is finished there, he will be moved to the monitoring unit to induce enough seizures to get a clear understanding of exactly where the seizures are coming from. This process will take between one to two weeks. There will be someone with him at all times while he is there.

After they get enough information they will take him back to the operating room to get the probes removed. I will be with him the day he goes in for the surgery and set up in the monitoring unit. Then I will have to work the rest of the week (the next 6 days).  Then the following Monday and Tuesday I am scheduled to be off work, so I can be with Charlie during these critical recovery days. We are not sure when they will decide to remove the probes and release Charlie to return home.

I can’t even come close to explaining to you how hard this is on me to have to work during this time. My employer only allows so many calendar days off for people using their Family Leave allowances.  Because of my own gallbladder surgery in February and the time I have taken to be with Charlie, I only have only five more weeks before I run out of time allowed. Chances are I will be moved out of my current position. At that point they will either let me go or demote me, following the company’s newest policies.

The next step in this process will be either the implant on the brain to help control the seizures, or a possible partial lobotomy to remove the area of the brain that is causing the seizures to occur. From all the tests he has had in the past both the neurosurgeon and us are more than likely expecting that the implant will be the better choice.

I would like to ask please everyone send Charlie some uplifting texts during this time.

When they decide what they are going to do I will be taking my time off then to take care of Charlie. This has been a long hard journey on both of us. From beginning until now has been 11 years. During those times we have become so bonded together, I can’t imagine my life any other way. We have dealt with numerous doctors giving up on him, when they didn’t know what to do next. We have dealt with being turned down after many of the same tests we are doing right now at Penn State Hershey, the fourth hospital system in a long string.

We started out seeing docs at Johns Hopkins Hospital in Baltimore, then at Thomas Jefferson Hospital in Philadelphia, and then right here in York Hospital. Charlie had the V.N.S. implant surgery at York Hospital.

Image result for stress

All those tests, all that hope, all that stress … they have really taken a toll on both of us. Right now Charlie is so ready to move forward. As you can imagine, I am dealing with my own issues — burnout, and bouts of depression. I am putting on my “Happy Face,” but truth be known, I am afraid. On top of that I am bone weary and dead tired. I don’t like sharing my feelings, because I am used to being the strong one who handles everything.

The last year or so I have had some serious depression and feelings of hopelessness. I have talked to my family doctor and I don’t want to be “medicated,” because I tried the drug route in the past and it affected my ability to work. I talked with a therapist in the past, at my doctor’s suggestion, and the therapist claims that I am a “co-dependent” with Charlie. I think another word for it is “caregiver burnout.” I have spoken with other caregivers and they all say the same thing. Every single caregiver insisted that there was no time for them to take care of “THEMSELVES.” Everything we do is for our loved ones. It is so exhausting that we have no energy or desire left to take care of ourselves.

I am not looking for pity. I actually hate pity. I just want to give you a better understanding of what is really going on with us personally. Millie can better explain to everyone what is being done medically now, and what procedures Charlie may have in the near future.

Please pray for Charlie. And pray that the doctors find the answers this time around. We are moving forward with the confidence that he will have an improved quality of life. Charlie deserves that much. He is a good man with a heart of gold. We thank each and every one of you for the little things you do for us. We really appreciate everything.

Much love to all of you,