Wednesday, February 5, 2014
Mistakes
January 30th is a hard day for me. It is a day that stands out in my mind because it was the date of Jeff's first seizure. Aside from the fact that the seizure itself was frightening, there are two things that are hard to accept from this day.
One, that a healthy 42 year old man could suddenly have a seizure and two, the mistakes I made afterwards.
I don't throw around the term "healthy" lightly. Jeff was proud of the fact that he had never had a broken bone, stitches, a visit to the ER, surgery, or a serious medical condition. In 2008 he was diagnosed with asthma and was on medication for it. He had one ER visit due to the asthma a year before he died when we couldn't get an asthma attack under control and he needed a nebulizer treatment. In 2012 his asthma was so well under control that he had been able to cut his medication in half. He was thrilled, because he didn't like being dependent on so many drugs. While Jeff was overweight he was active and nothing held him back.
So to say that the seizure was a shock is to put it mildly. I have read that 1 in 26 people will have a seizure in their lifetime. It seems that medical science doesn't quite understand all the reasons this can occur. I have a hard time accepting that, both in 2012 and now. I still don't understand what caused Jeff to have a seizure. I could understand it if he'd had a head injury or a brain tumor, but for his brain to suddenly go haywire and misfire electrically I just can't wrap my brain around that. I want there to be a reason.
But what is the hardest is trying to live with all the mistakes. Knowing what I know now and knowing what I could have done differently prior to February 26th haunts me and it gets worse this time of year.
Jeff went to the ER in an ambulance that day. They ran blood work and conducted a CAT scan. He was discharged with comments that all was normal and to follow up with a neurologist and his primary care doctor.
I took Jeff to both. He also had an MRI and an EEG. I took Jeff to his pulmonologist to make sure that his asthma medication wasn't a cause. I asked for a sleep study and I had him scheduled to see a cardiologist. I was looking for a cause, I was looking for a reason. But I wasn't fast enough.
We waited 3 weeks for an appointment with Jeff's pulmonologist. Why did I let his happen? Where was the bitch who won't take "no" for an answer? Why didn't I insist that they see him that week? Why did I not insist this was an emergency and that I'd just show up in their office if I didn't get an earlier appointment?
Why when the cardiologist said 6 weeks for an appointment I didn't do the same? I can be the pushiest broad you ever met... why wasn't I? Why didn't I treat this with more urgency?
I won't get into the mistakes with the neurologist, but I have since learned that there are "specialty interests" for neurologists. If I had known this, I would have found one that "specialized" in epilepsy or seizures.
Of all the mistakes I made, I have such a hard time forgiving myself for not acting like myself. I can be mean, I can be polite, I can be scary as hell and all because I expect to get what I want and Lord help you if you stand in my way. This is actually normal for me... why wasn't it then?
I made a mistake when it came to Jeff's medical care: I didn't treat it with enough urgency. I thought I had time to find answers and I was wrong, I was arrogant.
I can never fix that mistake and I just can't forgive myself either.
Sincerely,
Jeff's Widow
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You don't realize it, but by sharing how much you all did, including tests and the ER, it has given me a little peace for myself on the question "what if?" I always wondered what would have been? Could I have stopped the seizure? Could I have saved Josh by getting him to the hospital? As I read through all you did, I realize the answer is no. I know it doesn't likely help your sadness and your what ifs, but I wanted you to know that sharing your story makes a difference. Hugs!!!!
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