Because there was so much information about Tenley’s hospital EEG stay, I decided to gather up your most asked questions and put them in a blog post. So here are 7 questions answered about Tenley’s hospital EEG stay.
1. Why are we doing this hospital stay?
This is a week-long EEG (brain study for seizures) she’s having done to check the status of her seizure activity. It will help us make decisions about the course of her treatment, if she’s a candidate for surgery, etc.
2. What are you hoping the test will show?
Well, we’re hoping for a seizure. I never thought I’d say that. It feels strange! But, it’s true. We want to capture one on camera (yes, they watch and listen to us in our room 24/7) and also on the EEG. This is how we can gather more data. Without this info, we’re just going off of what we see and report to the doctor and his assessment of that. We know she has seizures, as that’s been proven by all of the above before. We’re just looking for more info.
3. Why have you had to sleep deprive/ not let her have food, etc.?
We are trying to get her to have a seizure under doctor care so they can capture what they look like, what are of the brain they are coming from, etc. to get as much information as possible on how to help her. Things like lack of sleep, stress, being sick, lights flashing, overexcitement, etc. can trigger seizures, so they test all these things. The not being able to eat from midnight to 3pm is because one of the tests for her has the potential to require sedation, so they can’t let her eat during that time frame
4. Why have there been so many last minute changes to the schedule/ how things are being done, etc.?
We’re a go with the flow kind of family and don’t really have a choice. We planned the week out to a T, but we have no control over how it will go, so we have to remain flexible. We make the best choices for her/us as they come, and luckily, we have a lot of help around us for these types of situations.
5. Why can she not leave the room? How do you entertain her? Isn’t she miserable?
She is hooked up to wires and a machine that reads her brain activity (the EEG), and it only stretches so far. She is able to move around the room. We’ve set it up to have visitors daily, people to call, and gifts to open when she gets antsy or needs a distraction. That has helped immensely. She’s easily distracted, so that helps. She’s also very resilient. She has to be. So this is no big deal to her really, to be here. She’s used to doctors. She’s made friends will all the nurses here, and gotten visits from the hospital dog on duty. She’s in great hands.
6. How are Craig and I – and even Braden – handling things?
Well, we’re being flexible. That’s all we can do. We didn’t expect some of the changes, but they happen. We don’t like last minute things, but they happen. Braden is getting lots of attention from his Yaya and Nana, and his teachers and school are in the loop so they’re keeping a watch on him, too.
7. What are the next steps?
After the testing is over on Sunday and we are released, we have an appointment the next week with her doctor for her results. At that time, we’ll decide what steps to take. Will we reduce/increase/change her meds? Is there another course of action? What did we learn? etc. As this is just a fact-finding mission, there’s really nothing we anticipate doing other than possibly adjusting med and trying to wean her off if it looks like she’s doing better or having less seizures. That’s always a bit nerve-wracking simply because you never know if she’ll have a seizure, but we are more comfortable each day with what they look like and how to handle them, and with summer coming up, it really is a good time to do a trial run of changes.
Hopefully answering those 7 questions helped give you a little more insight into what’s going on over here at Casa Bickford. Feel free to ask anything – we’re open books and love to help educate on special needs and other things regarding our life.
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