We spent another night in the hospital with Faith. This is becoming such a regular occurence, that the nurses know Faith by name and we joke around with them and the paramedics. I realized last night, how callous I must sound to people who don't know me. I can joke with the best of them, and I realized how cynical I have become through this journey...something I will have to keep an eye on.
She had a 4 minute focal seizure last night and it turned into a 16 more minute grand mal seizure. She had her ativan protocol of .5 at 5 minutes and at 10 minutes. We called 911 at 15 minutes and her seizure stopped at 20 minutes. We went to the hospital, because we were worried about a subsequent seizure, like she had on Christmas eve.
Anyhow, this is the moment in my life where I wish we had a manual. I wish we could just be told "you should do this" or "this is what is happening next"...I want to stop having to make these decisions. I don't want the responsibility of this childs future on my shoulders. We are at a crossroads where the decisions we make now are going to impact her for the rest of her life. The decisions are mostly health related and will end up with potentially horrible effects as she grows into adulthood. I don't like this responsibility anymore.
You may be worrying now, as you read this...but I can assure you, I am just at one of those places again. I always get past this stage and all is well after I digest our new circumstances...but right now, I need to vent some of how I am feeling. And I am not posting everything that goes on here, some things are still private...this is just what I am willing to share:-)
The decisions we are needing to make right now include:
Should we get a portacath so that if and when we go to the hospital (which is becoming greater and more often) the nurses can have a direct line for blood work and hydration. While she was still sleeping and groggy from the ativan they put a line in her hand. It took two pokes and me pinning her down, which was hard...or like on Christmas eve when the did the Intraosseous Access through her leg bone. Having a PAC will allow them to just get right in there, no matter what or how she is feeling. So, now we are researching this option. Our questions are:
- What are the risks?
- How does the procedure work?
- How long does it stay in place?
- What are the benefits?
- How did you like it? (if you have experienced one personally/your child)
- Would you use one again?
- Can my child still swim, bathe, participate in physical activity?
- Do we really want to go through this again?
- If trileptal isn't working, what should we use instead?
- The doc suggested dilantin, but I don't like the effects of it...
- Do we keep her on trileptal and add another medication?
- Should we look at some kind of diet change? High sodium? Gatorade to assist in potential dehydration?
- What other options does someone with epilepsy/seizure disorder have?
- If you are an adult and have lived with epilepsy since childhood, what would you ahve wanted your parents to do differently?
In my own perfect world, that is how life would be...