Gabby being a little nervous waiting for the EEG technicians to come in. She stayed right next to Raquel until they asked her to leave.
Here she is in her hospital gown waiting with dad while they got the equipment in order.
Here's what the electrodes look like. They get glued all over her head - and there's a whole lot of them.
It doesn't hurt when they do this. She was mad that she was being confined - and it does take a little while to hook them all up. A nurse wrapped her in a sheet to keep her arms from moving, and I had to restrain her legs. Then they wrap gauze all over her and top it with a gauze cap.
Introducing my very tired Little Smurf.
She eventually did take a nap ...
...but only for 15 minutes. Even though she had all that stuff on, she was a real trooper the entire time. I had to keep her confined to her bed for the full 24-hours. She wasn't able to walk around, not even in the room. Keeping her centered in front of the camera wasn't that easy at first, but I ended up laying down with her and watching television, reading books, etc. and I think she got very used to having some quiet time with Mom. We ordered room service, had people from the playroom constantly checking on us to see if we needed any toys, etc., and a lady from the healing center even came in to play the harp.
This is what the VEM looks like. To the right was a live video shot of Raquel. To the left was the EEG being displayed. This test allowed Dr. Mower to observe Raquel's movements while observing the EEG at the same time to make sure her physical activity is consistent with her brain activity. It was all very fascinating.
Dr. Mower came to check on us yesterday at lunch, as well as this morning to sign off on our discharge papers, discuss the test results and make some medication changes.
Here she is getting the electrodes taken off. I told you there were a lot! And even though they tried to get all the gunk out of her hair and even sort of washed it, boy does she stink! It will probably take a week of shampooing to completely rid the smell.
Besides stinking and having a red mark on her forehead from one of the electrodes, she's back to her normal self and obviously very happy to home, able to walk around, and get back into her normal daily routine.
So, what were the findings? Well, I guess there's good news and bad news. The good news is that she is not having seizures. The bad news is that she is still having abnormal brain discharges at night while she is sleeping. This is pretty consistent with Landau-Kleffner Syndrome (also called epileptic aphasia). These discharges don't appear to be less frequent than they originally were when we did the in-home EEG over a year ago. That basically means that the Depakote she's been on has not helped in this regard, and, since I am having issues with her being on it in the first place, we are weaning her off of it and on to another one and then adding a very low dose of Prednisone, which is typically what is done when treating LKS. Prednisone is often attributed to producing speech. We have a follow-up with Dr. Mower in 8 weeks, then have to do the 24-hour VEM all over again in 3 months so he'll be able to tell if his treatment is working as it should be.
I'm not really happy about having to do it all over again, but it definitely wasn't as bad as I thought it would be. It's just more of an inconvenience. And the overnight stay really put things into perspective because we were in the Hem/Onc department and there were all of these bald little kids walking the halls and being pushed around. Raquel may have looked like a smurf for 24-hours, but I'm fortunate I was able to lay in bed with her and watch tv instead of sitting next to her in the chemo room with an IV. That was brutal to watch. One of the little boys was just a year and a half old, and he came to say good-bye to her when we were leaving.
Again, more answers, not all of them good, but I continue to remain positive and am happy we are making medication changes. The cup is still half full, remember?
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