Wednesday, August 24, 2011

Harsh realities

Throughout the process of creating this blog, and keeping you all updated on our fundraising efforts, I've sort of intentionally kept the tone very light. It's no fun to read about doom and despair, after all, and I get that.


Today, though, it's hard for me to be upbeat, and this is a part of living with epilepsy. Whether it's yourself, or someone you love that has it, there will be bad days; days where you doubt yourself, your doctors, and your ability to cope.


Yesterday morning, Rachel missed her early dose of her medications. This is generally her lower dose of the same meds she takes in the evening, and the same meds she's been on for quite awhile now. Usually, I am all over her to take them on time. For the first time in at least a year, they got missed.


The result is that at about 10:40 p.m. last night, Rachel experienced a tonic/clonic (formerly grand mal) seizure, which hasn't happened in at least 5 years. We were scared, but realized she'd missed the meds, and hoped that would be the last of it. This morning at about 6:40, she had another one. 


These seizures go on for more than 3 minutes, with low oxygen, blue lips, bitten cheeks and tongue, and convulsions. Now we're really worried. We have emergency meds here at home, called Diastat, but fortunately didn't have to use them, and we really hope we're over this particular episode now. I have called her neurologist and they say to just wait it out, as it takes time to get those med levels back up in her blood.


It's incredibly hard to wait. We're exhausted, and scared. Brett is here to help me, and I am so grateful. We'll take turns being up with her, while the other tries to catch a little sleep. More than ever, it's things like this -stupid human error- that reinforce how much difference a Seizure Response Dog could make in Rachel's life. What if we weren't there? I don't even want to think about it.


-Kelly

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