Greetings friends from Building CCC at GUH in DC. Oh what a day we have had my Courtney and I. What.a.day. Starting with a full fledged grand-mal seizure with all the bells and whistles at 3 a.m. this morning, the birthday girl decided that today would be the day to make her Mom and Dad sweat a little.
After our little seizure party, everyone went back to bed and we were not so happy to hear the alarm at 6:30 a.m. Nonetheless, we got up and went to give Miss Courtney her tube feeding and meds, discovering her feeling a bit warm. I stripped her down to her skivies and waited 30 minutes thinking that maybe I had dressed her too warmly.
Alas, I had not. She had a fever of 103.5 which is no good in this Mama’s play book. This child never has a fever even with ear infections, UTI’s and pneumonia. I knew something was off. As I got her ready for her day she began to have these little episodes, like she was starting into a grand-mal seizure with hands clenched, shoulders going up, and arms and legs shaking. But 15-30 second later she would completely relax and not “finish” going into the grand-mal.
After and hour of these little diddys, I administered an extra dose of one of her seizure meds which is the first step in our protocol and watched her for another hour. These little episodes did not stop.
So off to the ER we went, not really wanting to but knowing something different was happening out of my realm of comfort. Not exactly where I wanted to spend Miss Courtney’s birthday. I mean, doesn’t ER mean “Entertaining Revelry”. Hey, let’s go partay down at the ER where the wait is long and the smiles are few. Oh yeah baby…let’s do this thing.
As a writer it was a gold mine of human emotion and story telling potential, especially a later admission who just kept telling the Docs they were full of “horse sh@$”.
But as a mother, it was a little too much. Especially when we finally got a bed upstairs to start her 24 hour EEG and they made us wait in the hallway of the ER while the transport lady was on her way down to get us. We witnessed some dude pee in a cup behind a sheet. Thank you Jesus, Courtney is blind. How I wish I was to. I will never get those five minutes back. Yikes.
Needless to say, I would rather arrive at the ER at 3 a.m. that at 8 a.m. because all the crazy people go home at night and leave the sane ones to rule the world.
So not how I envisioned celebrating my daughter’s 22nd birthday. I thought we would have a few visitors this morning, drink coffee and eat chocolate mousse cake. I thought we would grill a little dinner and enjoy a beer on the front porch and have a little ice cream.
No, apparently Courtney would prefer to wear her “I am a Drunk Gnome Hat” and have a party in Room 5304 for the remainder of the night. Yes, she really does look like a drunken gnome and no, it’s not her best look.
As I sit here once more by her bedside, I have no idea what is going to happen. She is still having episodes and the Docs have just confirmed they are in fact seizures. We wait to see what the next move is. Probably a lumbar puncture to rule out Encephalitis which is a virus of the brain. Unfortunately she has had this before which makes it’s recurrence more likely. We will just have to wait and see what the remainder of the night brings.
That’s where we are my friends. I am tired. I can only imagine how exhausted Miss Courtney is. As I told my friend K in an email earlier tonight:
“Things here are quiet on the floor…I wish I could sleep but right now I want to cry and I really can’t. It freaks the nurses out too much and I need them to be focusing on Courtney and not me. I am tired. I am weary and I want to take my girl and go home.”
Maybe I will eventually get that cry but for now I am pushing a little black button every time Courtney seizes. So far I counted 20 times in 42 minutes. This is crazy.
The DNI/DNR is in effect and the staff has been very respectful of that. They are doing everything they can to make her comfortable and try to figure out what is wrong. I have no idea how this will affect her scheduled neurosurgery next week. That’s more than I can handle at the moment.
As you all know Jerry will be laid off Sept. 1. so we really need to get this surgery done so it is covered by insurance. Also, we really need that wheelchair seat to be delivered by then so we don’t take a hit on that as well.
Did reading that stress you out a bit? Yep…me too.
So we pray, we wait, we watch as see what God allows this night. Happy 22nd Birthday my sweet little girl. You are a warrior princess of EPIC proportions. Now you and God need to decide what’s gonna happen next.
Stay tuned friends. I suspect it will be take your breath away. It usually does.
In the mean time, me and my girl will be hanging here for a bit. Courtney wearing her new kick-ass new pink princess PJ’s curtesy of her Godmother, Aunty Sharon, and me searching to that elusive oatmeal chocolate chip cookie my mother left for me, but I suspect my husband absconded with.
Seizures are like husbands…can’t live with them, can’t make them go away and leave the cookies behind.
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