When people hear that she had a seizure, I know from reactions, or lack thereof, that they think of just a normal seizure. But Ren’s seizures are not normal. Hers are potentially dangerous ones. A seizure over 5 minutes long is considered dangerous. All of Ren’s seizures have been at least 30 minutes each in length. And she had her fourth one three days ago.
T went in her room around 9:45 a.m. to check on her/wake her up, and found her in the midst of a full “grand mal” seizure, as they used to be or are sometimes still called. I had checked on her before I left for work, around 7:00, and she was sleeping, but beyond that we just don’t know when it started. When he found her in this state, he ran around looking for her Diastat, her emergency seizure medication (i.e. valium), and of course couldn’t find the current one right away. He called 911 during this search as well, and after some minutes found the right medication and administered it as the local first responders arrived and shortly afterward came the paramedics. The Diastat didn’t seem to slow it down, though it was not given much time, for the paramedics proceeded to administer another drug. They thought it was starting to slow down at this point (though T didn’t notice any change), but we learned later that they administered a second dose in the ambulance en route to the hospital. She had stopped seizing by the time she got to the hospital, but that still leaves the seizure as lasting at least 30 minutes that we know of, longer for sure, we just don’t know how much longer.
I was called at work, and T picked me up and we rode to the hospital together. Ren was no longer seizing, and asleep. After some blood draws, a urine test, and a CAT scan to test for various possible causes such as an infection, off gluocose levels, a problem with her shunt, and etc., they told us they were admitting her to the hospital. After a very, very, very long wait, with Ren sleeping the whole time, we left the hospital at 10:30 p.m. We had been there for about 11 hours. The doctor preferred to keep her overnight, but we had communicated that we preferred to not stay overnight, and he felt since we knew her best – she awoke off and on during this whole time, but by 10:00 she was staying awake and acting more like herself – and we had been through this before – that he would give us the okay to go.
During this hospital stay, we had a long conversation with the nurse practitioner who works closely with our neurologist. We asked many, many questions. We really do not know the real cause of the seizures, but she reminded us of the fact that her having a shunt is a real possibility, because it is a foreign object in her brain. She did not, though, seem to have any explanation as to why she has such long seizures. And, after discussing how these lengthy seizures are very uncommon, but they do happen, and that it is concerning, we asked point blank, can she die from these seizures. She carefully worded it this way: people can die from seizures if they cannot be stopped.
So….what’s next? Because Ren’s current anti-seizure medication is not working, and it is at its maximum dosage, they are going to slowly introduce a new anti-seizure medication. It is not better or worse, stronger or weaker, just different. We are to continue to give her her current medication, plus this new medication, small doses at a time, increasing it a bit each week, and when we get to the full dosage of this new medication, then we will at some point stop with the other so she will just have the one. Also, we used to have a camera in her room so we could see in her room, in her bed, on our tv in our living room. Then it broke. We are going to buy a new, better one.
So, though it is all a little frightening – I have a strange sense of calmness also. It could be that I am just numb. Or that I am getting over the flu, which I woke up with the morning after (thankfully we were not at the hospital for that!). But, I am hoping, no, believing, this is because I just have faith that the Lord will protect her, or that I just know He is in charge…of everything. I continue to pray, though, that He will put an end to these potentially dangerous seizures.
Ren is doing fine now. She seems herself, and we have not noticed any differences, yet. She is still her sweet, happy, joyful, lovable, wonderful self. But we worry how much of this her little body can take.
PLEASE, please, pray that this new medication will work. That she will not have to experience any more of these lengthy, dangerous seizures. She also goes in for an x-ray on her femur next week – please pray for healing of that as well. And, of course, prayers for total complete miraculous healing are always welcome.
NOTE: I want to note that with some of the bad reputation some emergency vehicles/systems get for not getting to emergencies in good time, that in every one of our calls, our town’s first responders have been there within like 30 seconds, literally, and the paramedics, within 5 minutes. We are so truly thankful for both of them, their quick response, their professionalism and skill, and care. They are all awesome.