|Definitely the BEFORE photo!|
Because I lacked information to even ask the right questions, I thought I would document our visit and others can learn from our experience. Of course, hospitals and doctors are all different, but this will at least give an overview of what to expect.
What to Bring
- Button front shirts - once the electrodes are on, nothing is getting over that head
- Extra pants, comfy clothes for you and your child
- DVDs or Videotapes, music, games, books - some hospitals provide these things, but ones from home may work better for your situation
- Extra snacks. Our hospital provided drinks and meals, but no in-between snacks
- Pillow & sleeping bag for person staying over night with child
What to Expect:
- Be sure to ask what kind of support is given. In our hospital, the unit is considered a "well-unit" - in other words, "DIY." There is minimal nursing staff, so I was in charge. I was even told where the extra toilet paper was located.
- Find out how long your stay will be. We were set for 24 hours, but others can stay for as long as 72. Ask about how many "events" they want to see before they will let you leave. An "event" is a seizure.
- Find out what the procedure is for discharge. Does the doctor have to call in? Visit?
- This will be a stressful and tiring experience. Ben is a go-with-the-flow kind of kid, but this stressed him out. After the electrodes were on, we gave him an hour to chill while watching Bob the Builder.
- Ask about the rules. Ben could not leave the room once he was hooked up to the electrodes. Several times, Ben took my hands and tried to lead me out the door.
- Using the toilet may be difficult. Ben is trained on a schedule, but with wires dangling from everywhere, it made it hard to keep to our regimen. He also used it as a time to try and rip off the wires. Ben does not walk on his own and that added another dimension of difficulty. We just did the best we could.
- Plan on your child staying home from school the day of discharge. Between lack of sleep, hair full of goo and just whacked out schedule, they will need an adjustment period.
|24 hours in this room.|
Surviving the Stay
- Plan for breaks. I left for an hour and felt like I had been gone forever.
- Ask another adult to help in the beginning. Checking in and getting the electrodes on were tricky and having another adult there was essential for me.
- Plan for OT, Speech and PT to visit for their sessions. This breaks up the time for you and your child. Ben's speech therapist came by and it really helped for Ben to have that interaction.
- Check to see if siblings can stop by. Logan, Ben's brother, visited and it was clearly a highlight for Ben.
|Ben's thoughts: Okay, what have I gotten myself into now?|
|After taking measurements, the EEG technician marked Ben's head with a blue pencil.|
|The technician cleaned the spots with a lemon scrub. This removed the oil from scalp and allowed for a good connection.|
|Then electrodes were glued to Ben's head.|
|After applying electrode and gauze with glue, cold air was added to seal the glue to head. The glue smelled like Compound W and the air machine was loud. These did not affect Ben, but other kids with certain sensory issues may be bothered.|
|Positioning Ben's head took a lot of concentration and strength.|
|The procedure could take 20 minutes. It took us 45 minutes because Ben moved a lot.|
|Everything was wrapped in gauze, taped and then covered with the fancy "crocheted" hat.|
|At 3am, Ben tore off the gauze for the 4th time. With it off, he seemed happier. He listened to me when I told him he could not pull on the wires. Ben has a huge problem with things, like hats, on his head, so taking the gauze off helped.|
|The wires were connected to this box, which were connected to the wall monitor.|
Our neurologist had access to the video from her office across the city. Some neurologists have the software at home and can watch from the comfort of their home. Our doctor did not visit, but she called to speak with the nurse twice.
Before leaving, the EEG technician removed the electrodes using strong smelling acetone, essentially nail polish, to dissolve the glue. (At home, several hair washings with a comb and baby oil removed everything.)
As we walked through the parking deck toward our car, Ben let out a few hurrah's and his smile continued as we drove away. His excitement was still obvious when we entered our house.
It was definitely an ordeal. Being prepared physically and emotionally is essential. Today, I am exhausted and it may take a few days to recover.
Here is an article written by Gina St. Aubin - Here's 10 helpful hints you should know. If you have anything to add from your own experiences with a Video EEG, please feel free to add in the comment session.