Video EEG

Video EEG

We were admitted on December 16th for an overnight Video EEG.  Dr. Amy Goldstein ordered this test as part of her evaluation of Elizabeth.  Elizabeth had a routine EEG done in October, which was normal.  However, she slept through the entire test. Since she does have staring episodes, and she has several different findings on her brain MRI that would make seizures likely, we decided to have the overnight Video EEG to try and catch one of the staring episodes. 

We were admitted in the afternoon on the 16th, and they took us to our room in the EEG unit on the 6th floor.  We met her nurses, and the technician hooked her up to the leads.  She did not like this!  The leads do not hurt to have put on, but they use Medical Air to dry them on, which smells, and they are heavy.  The weight of the leads, plus all of the wires, made it difficult for her to hold her head up, especially with her low muscle tone.  They wrapped her head in gauze, and they made her a pony tail of wires wrapped in gauze.  The nurses brought in a play mat for her, and I spread out her toys.  We were trying to make her as comfortable as possible. 

Mom, Elizabeth and I watched Frozen 3 or 4 times.  She really likes that movie.  She kicks her legs whenever Elsa sings "Let it Go."  We also ordered her some food, played on the mat with her, rocked her, sang her songs.  It was hard for us to watch her struggle to hold her head up with all of the wires.  Elizabeth did not nap much that day, so in the early evening we laid her down for a nap. She did not care for her crib that was encased in clear plastic glass.  She rocked herself to the point where she toppled over in her crib and literally crashed to sleep.  It was hard for us to watch her do that.  She did not want held or rocked, but she needed to sleep. 

We had a visit from Shiloh the therapy dog.  He was on her floor, and Elizabeth really liked him.  She touched his fur, petted him, and we got a few pictures.  She is learning the sign for dog in Speech Therapy, but I could not get her to make the sign. 

That night, Elizabeth slept restlessly.  She was trying to avoid sleep and get the leads off of her head.  So, she kept banging her head off of the sides of her crib, and then she would rub her head off of the mattress.  We had to call the nurses in a few times to rewrap her head.  They eventually put a chin strap on her. 

They gave Elizabeth a leopard while on the EEG unit.  She had received a stuffed dog while leaving Genetics.  We took the dog home and gave it to Celtan.  Elizabeth kept the leopard.  She really likes them both, because they squeak when you squeeze them.  The animals were donated by PETCO.  The staff at CHP were passing them out to the kids that day.  The items that are donated for the children at CHP are really great.  Elizabeth really enjoyed both animals, and it did help to pass some of the time.  Celtan really loved his dog, too.

They discharged us on Wednesday, December 17th around 11 a.m.  Elizabeth was glad to get unwrapped, and they put a bunch of conditioner in her hair to help get the glue from the leads out.  We took a "jail break" picture of her and her leopard.  It was a long night watching her struggle with her head wrapped like that, and mom an I got very little sleep.  As we were leaving, we were treated to another awesome surprise.  Eat N Park was stationed in the lobby handing out free parking passes.  So, we traded our discounted parking pass in for a free one.  Happy Day!  We were grateful for the free parking.  They gave us a ticket that was reduced to $5 for the 24 hours that we were there, which was nice.  The free parking was much better.  Thank you to Eat N Park for the much appreciated free parking for the day! 

Dr. Goldstein's office called on Thursday the 18th to tell me that the Video EEG was normal and reported no seizure activity.  This was wonderful news.  However, they also noted that she did not have any staring episodes, so they may be repeating the test in the future.  So, when we repeat that, and if we need to repeat it, is yet to be determined. 

We have a nice break from appointments for a few weeks.  Elizabeth returns to Dr. Herzig, her Opthamologist, in  Wexford on New  Year's Eve.  That also happens to be my birthday, so maybe we will make a special girls day out of it.  Then, our next appointment isn't until January 9th when we see Hematology and Dr. Jabbour at CHP. So, we plan for lots of relaxing and cuddling over the holidays!