Tuesday, January 1, 2008

My little druggie

So, I called the neuro group yesterday on the off-chance that I could pick their brains about curtailing the seizures again (even though I knew what they would tell me). Nervous Nelly that I am, if I feel that she needs Diastat (which we gave her two nights ago), something more needs to be done to alleviate the severity of her clusters. They put the middle man (the staff nurse) on the phone to do their dirty work. Nice lady, but 100% clueless about Jade's situation. After four separate phone conversations with her (grrrr! ), trying to get the simplest answers from them, this was the doctor's directive: dope her up. The much hated drug Klonopin (a benzodiazapene), was their suggestion. I didn't think it helped much before, but my biggest hesitation for not using it is because it really makes her lifeless (and constipated). I knew there wasn't much else to do, so we started the higher dose yesterday. Today, she is a rag doll again. I also had to give her another enema because she has no desire to "move" or interact in any other way. I hope she's at least a little more comfortable now. She slept a little better last night, but I imagine having a seizure cluster last for a solid hour (from 8-9pm), anyone would sleep well. She clustered again for an hour from 4-5am, and then again from 8-9am. Gee, I'm glad she has Klonopin...! (yeah, I'm a little cynical)

We were also privileged enough to visit the Urgent Care to have a look at her ears, nose, and throat, and to listen to her chest. She developed a wet cough during the night, and the nurse from neuro suggested we have her looked at to make sure it wasn't serious. So, we trekked to the clinic and sat, and sat, and sat. It took over an hour to see the dr./nurse, only to have them give her an essential "clean bill of health". We think maybe the excess saliva from the benzos is getting caught in her throat, causing the wet cough. They sent us away with a script for a suction machine and a Happy New Year. Whatever.

As for the other two kids, they are unbelievably bored!! Unreal to me since I think they scored every toy on this earth for Christmas. We did play some pretty fun games, though. T and I pulled out Electronic Battleship (one of my childhood faves), and played until he got bored. I almost won, too :( Now, they are on to another activity.

To whomever reads this blog, thank you. Happy New Year too! May this new year be rather uneventful and healthier for my little angel.


Kirs said...

Kay, this is a wonderful idea to have this Blog for Jade. I will continue to tune in to keep up to date on her health. Take care of yourself and get some rest when you can. Our prayers are with you!

Janet said...

Kay - Happy New Year to you too! Sending hugs and kisses from me and Tyler sends some for Jade. He doesn't remember her from when you brought her up the first Christmas after she was born, but I've shown him the pictures on your site, and he has a heart of gold, so he's been praying for her to get better.
Thanks for keeping us informed.

Love you!

Our peanut in a nutshell...

Hi everyone! Thanks for visiting my blog. My name is Jade and I am currently 8 years old. I have a big sister and a big brother whom I love very very much.

I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.

Some of the problems I face include:

Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.

I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.

I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.

I cannot talk nor communicate with gestures.

I cannot walk, nor will I ever walk.

I grind my teeth. So much so, that some loosen during seizures.

I cannot grasp objects or use my hands for the simplest of tasks.

I cannot sit on my own. I can, however, sort of roll over from side to side.

I am choreoathetoid. I cannot control the jerky movements my arms and legs make.

I have life-threatening seizures every day. This is my greatest challenge.

So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.

Friends who follow this blog