Wednesday, September 2, 2009

The War Continues

I am fighting a war. My daughter has seizures that sneak out of nowhere and make our world come to a screeching halt. Just when you think they are gone, they come along again silently without rhyme or reason.

I am fighting another war at the same time. Just when you think you have a handle on her blood sugars they rise and fall with no rhyme or reason and bring our world to a screeching halt.

I'll continue to fight for my daughter, but just how long before it will get worked out? Will we be doing this forever? I thought we had it rough before, but this is harder than I ever imagined.

I was OK with not being able to leave Kendall with just anyone, tending to her very special needs all day, and battling her eating, administering medication, cooking, weighing, chopping the ingredients for her meals, getting her to therapies and making sure we were following through at home. I was OK with all of that...but I had some breaks.

Now it feels like there are no breaks. I can't even go in the other room without making sure I have a video monitor on her crib while she's sleeping. I can't take her for a walk without making sure I have emergency seizure meds. I can't go to a Dr.'s appointment without packing syringes, insulin, blood glucose lancets, ketone strips, blood glucose strips, glucometer, emergency seizure meds, bottles of a 4:1 ratio in a cooler. I can't sleep without waking every hour to check on her. How long can one person do this?

If you can't tell, last night and today have been hell. Her blood fluctuates way more than anyone anticipated. This morning her seizures returned. Not the long tonic clonic terrifying one (thank God) but different. And not her usual quick head drop arms fly over ones either. These are more stretched out. Less intense, but almost in slow motion. Her eyes flutter and her left arm and leg jolt up.

I called the Neurologists office where the nurse told me to give Diastat. I knew that was wrong. She was responsive. So I took it upon myself to give her 1/2 of a .25 mg Klonnopin. She fell asleep and they stopped. She woke up and they came back. None of the nurses know what to tell me. And once again, I AM NOT A DR OR A NURSE. NEVER WANTED TO BE. I just want my daughter to be comfortable. I don't care if she ever rolls over with purpose or sits or talks. I used to care about all that. But now I just want her to be like she used to be. Global developmental delays with seizures. PERIOD.

And believe it or not, throughout the hell of being stuck more than once literally every other hour, she's still smiling. Guess I need to learn a thing of two from my 16 month old.


Bronx Cataldo's said...

Question on the Klonopin is she on what they call the wafer Klonopin or is she on the regular yellow pill? The wafer contains some sugars so we don't use them. We get the regular pill it comes in .5mg and we just half or quater them. We only use meds in pill form only even antibotics.
I know its probably the last thing you want to do is read a book but there is a story in it about a mom who was bring home here new premiee and his equipment and also bringing home her daughter from hospital she has type one diabetes. Sorry I cannot find the book right now but will send you the title once I find it I was a huge sanity saver for me after Finny was diagnosed with the seizures.
Hang in there girl its early days yet and everything has to settle down but it will.

jocalyn said...

She is on the wafer I guess. It melts in her mouth. Im not too terribly worried about the tiny bit of sugar. We've given her 3 servings of apple juice to bring up blood sugar and she's still has large ketones. All of her other meds are supposedly Keto Diet approved...but I don't trust anyone anymore!!

Anonymous said...

I am so sorry to read about more seizures. I am praying daily for Kendall and your whole family.

Cjengo said...

I am sorry about all this girl. Mike tells me he feels he is in the trenches everyday, and I feel so guilty about not being there. I do have one question. Does Kendall lose oxygen during her seizures? Jude has "cluster" seizures so he doesn't lost any oxygen, and therefore he doesn't require the seizure med intervention. They administered a dose at Cooks, but I checked witha neurosurgeon there, and several other neurologist who said if he wasn't losing oxygen there wasn't any need for medical intervention. Who knows though, but we have gone by that rule. Just thought I would ask. Sure hope things get better soon.

Kara said...

Oh Girl...keep are amazing and you guys are an inspiration whether you know it or not...we all need to take a lesson from Kendall! Proud of you for the Mother you are!