Monday, August 18, 2008


I was holding Ms. N today when her body started twitching. Her heart rate, respiration, saturation didn't change. She looked calm and serene. She was asleep at the time. I almost didn't say anything, because it didn't seem like a big deal. Kind of like when a child (at least mine) jerk when they relax enough and fall into a deep sleep. It was like a dog (at least mine) do when they are in a deep sleep. But, it was odd so I called the nurse over and he went to go get the doc and they aren't sure what it was, but are calling it a seizure since that is a possible side affect (or would it be symptom) of meningitis and infection in an infant. It lasted about 3 minutes? and the other nurse (or maybe it was the RT) noticed that it was in all 4 limbs and didn't stop if I held her feet together. It was surreal thinking back on it. I was a bit surprised that they did think it was something to be followed (if not concerned about). So, Ms. N had another blood draw, an EEG, and another spinal/lumbar puncture. She had already had another brain u/s first thing this morning. The blood looked fine, the fluid from the spinal was clear and easy to get. The EEG needs to be read by an expert. The head u/s showed swollen ventricles, but no debris. The concern would be that some of the debris is blocking the flow of the fluid, but the doc didn't feel like that was the case at least yet because the LP was so easy to get with good pressure. I didn't realize they were linked and the same fluid. The doc is going to show me a good drawing that illustrates it tomorrow. I'm not sure how I feel about all of this. I think I should be more upset or more worried. It's not as if I don't know the worst case scenarios (or at least I think I do), but I just don't have it in me to get all worked up. She will either have brain damage and/or developmental delays....or, she won't. Only time is going to tell the tale. I continue to have trust and be impressed by the medical care she receives. From the medical perspective, it sounds like they are just going to continue to follow and monitor closely. That may change pending the final results from the LP and EEG. It's not as if I would do anything differently. I will not love her any less regardless and my love for her just continues to grow. I guess I'm just in a zen place where I know that it is all out of my control and all I can really do is love her and be the best mom to her that I can based on her needs, whatever they may be, like I am to my other children, like I was to my dogs. I just feel strongly that everything is going to be fine. I'd be naive to think she will have no long term affects from her ordeal. I'll hope and pray that she doesn't or at least nothing too serious, but the reality is that it all becomes more and more likely. Maybe I'm not understanding things as well as I think I am, but I can really do nothing but to be there for her, love her, and advocate for her if/when needed.


Susan said...

Aw, Deb. Yes, we have to be Zen about our kiddos. When people ask about Jakie's autism and the fact that he is a twin, and I am single, and how do I do it...and on and on...I have a similar response to what you've described. It is what it is. We never choose extra challenges for our kids, but we accept those they come with, and move forward. I think your attitude is a very healthy one.


Lori said...


You are in my thoughts and prayers everyday.


Anonymous said...

Debbie.. you amaze me. Sending hugs and good thoughts your way... Annie

Laura in L.A. said...

Debbie, my gut feeling is that it was a kooky little thing connected to all the treatment she's had, and she's going to be just fine.

That said, I admire your attitude tremendously. It really is all out of our hands.

Praying for N fiercely.

Love, Laura

Nina said...


I have the same feeling as Laura about Ms.N. And I pray to God to continue giving you strength and courage.


Miss X said...

Deb, I've had a few seizures. I had 3-4 between 17 and 22 yrs old. All grand mals (the full-on seizure, lasting >5 minutes). If you have any questions, ask me. I've done lots of research.

What amazes me is that seizures have no long term negative effects on the brain. It always takes me about a week to "reset" my brain but it hasn't affected my intelligence or ability to function.

Hang in there! Miss N will be just fine. And I'll be praying.