Are you comfortable?
Get a cup of coffee and sit back this is going to be a long one.
11:00 p.m. last night and the Doodle was still wide awake. He had just had another seizure so when I say wide awake, please don't confuse that with being alert, aware or with it. He was just very awake. His eyes were heavy and you would think that he might fall fast asleep at any moment. He looked drunk. Just as he would start to dose off, he would startle himself back awake or a Nurse would do that for him.
They wanted to try more Benadryl. I said no. The first two doses had not worked and now we were just overdosing him. He'd been so pumped with sedative and anti-seizure medication that he was freaking out. In the Doodle's 3 years on this planet, I can honestly say I have never seen him behave that crazy or yell that loud. He was kicking, screaming, biting his hands, hitting himself in the head and thrashing his body around the hospital bed while I tried to hold him. They had to remove his IV.
So they decided to try a sleeping agent, Chloral Hydrate. The name reminds me of Chloroform that you always see the bad guys use on a cloth to knock out their victims in the movies. It just sounds toxic like something you should not give a three year old. I was so nervous that it would have the paradoxical effect on him. But, at this point I was willing to try just about anything. I have to confess when they brought in the sleeping medication, I had thoughts of how nice it would be if I could have some too. At this point I would settle for a Tylenol P.M. and some bad chamomile tea.
So the Chloral Hydrate worked, kind of. He slept pretty soundly from 11:30 p.m. to 3:00 a.m. and then he woke up screaming. He was awake but still pretty out of it from 3:00 a.m. to 5:00 a.m., and he had seven of the little head drop seizures during multiple reruns of Dora and the Wishing Star. I had some wishes of my own for Dora.; like shut the &^%$ up! That little girl can talk.
He fell back to sleep until 8:00 a.m which was great except it was hard for me to get any real sleep; I never knew my body could still contort that way. The Doodle likes to sprawl out.
He woke up a little cranky and hung-over and had another grand mal this morning. After 45 seconds the Nurse was screaming for someone to bring her a shot of Ativan STAT!!! I kept waiting for her to grab the crash cart and paddles like I've seen in my doctor shows.
Then he came out of it. This one barely lasted a minute. He was laying on his side, coming out of the seizure and she was still asking for the shot. I was like, "Uhm excuse me? You are not going to give him that are you?" And she said, "Yes." And I said, "NO! He stopped seizing. He doesn't need it." She said, "No, he's still seizing and it's almost been two minutes."
"No. He's not. I've seen him have almost 100 of these now and he's done.", I snipped.
She said, "No. He's not responding..."
And then I lost it a little bit. Shame on me.
In my best, most stern and tactful voice I could muster without being the Bitch I'm known for I said, "No! You don't get it. He's always out of it after a big seizure. He's postictal. It's what happens after he has a grand mal."
I couldn't believe I was talking to a Nurse.
She told me since his eyes were rolled back when she lifted his eye lids, he was still seizing. Then we argued some more. I told her we needed another opinion.
She put the syringe down by her over-zealous side and called for the other Nurse. A nurse I actually know outside of the hospital and trust. The Trusted Nurse came in quickly and asked, "What's going on?"
The Other Nurse, still armed with the shot, said, "He was still seizing and I need to give him this Ativan but the mother doesn't want me to."
The Trusted Nurse looked at him.
"He's not seizing anymore." she said.
I just looked at her and said, "Thank you. She wanted to give him more narcotics that he doesn't need and I can't have another day and night like yesterday unless it's going to save his life."
The Other Nurse immediately got defensive; trying to explain why she thought he was still seizing. I just held him and told him it was going to be alright, even though I know it is not.
Hospitals are pretty good for the most part. It's the closest thing I've been to a Bed and Breakfast in a while so maybe my expectations are little high. And I'm not just talking about the bad food. I see the bill and it's the most money I've spent for a nightly stay anywhere in my life time so I guess I want it to be the best it can be. You want to at least feel like you got the best care possible.
My biggest complaint with hospitals, and if there are any nurses out there please listen. This is just my feedback but have you ever heard the saying, let sleeping dogs lie? Well, if you have a wound up insomniac Doodle Bug who has not slept for 24hours, it might be a good idea to tread a little lightly. You don't need to enter the room every 14.5 minutes like gangbusters-- marching around, flipping on lights. If at all possible, do everything you need to do at once--take the vitals, change the IV bag, give the medicine, reset and reprogram the really loud beeping machines, take out the trays or what-have-you and GET THE HELL OUT and stay the hell out unless it is absolutely necessary to come back in. I'm not sure why all of that needs to be spread out so much. Multitask.
Every time the Doodle would finally fall to sleep, the nurse would barge in. I know she was just doing her job but it seems like it could be done more respectfully and mindfully.
Late morning came and all I could wish for besides and improvement in the Doodle's health was to get the hell out of there. There was nothing that they were doing for him that I could not do at home. I can just as well watch him have seizure after seizure and save the $2687 per day ++ in the comfort and privacy of HOME.
The worst part about epilepsy is that it is individually based. It affects each person differently and to varying degrees of severity. There are different causes and triggers for everyone. Each individual responds differently to the medications. Each epilepsy case is different. Like finger prints, no two are exactly alike. Doctors do not know much about it. There is so much to learn.
So we're home. The Doodle has not had another grand mal since this morning but he continues to have the head drops and now he's severely constipated to top it off. He was always a pretty regular kid when it came to pooping. Now, with all of the influx of sedative and anti seizure medication, it has slowed down his system. His stomach pain and discomfort is just one more thing we can add to the Doodle's list of health issues. He's so backed up that even a glycerin suppository did nothing last night.
Two steps forward, three steps backward. We're back to square one, hoping he doesn't hurt himself on the tile. Praying he doesn't have another 10 grand mals in a row. Looking for answers. Relying on doctors and medicine. And, my favorite one...