This week, Emily had her overnight EEG.
Before I get into that, let me back up to Wednesday night. Emily woke up several times that night. She typically goes to bed at 9 and sleeps through the night. On Wednesday night, she woke up 3 or 4 times crying. We could not figure out what was the matter. We went through our usual debates (tummy or teeth), but weren't able to come up with a definite answer. We finally settled on teeth and gave her some Tylenol. I think she slept the rest of the night after that.
Thursday morning, Emily went to therapy as usual. We had decided earlier in the week that going to therapy would be a good idea since it wears her out and she was going to have to spend the rest of the day in bed for the EEG. After the lack of sleep on Wednesday night, I started to second guess this decision, but we went anyway. She had a rough start, but eventually settled down and did well in therapy (she has had some rough days at therapy lately, so it was nice to hear that she hadn't spent the entire time crying).
We checked in at 12 and were brought up to our room within 15 minutes. Emily didn't get hooked up for the EEG until about 2. So we fed her lunch and went through the check in process with the nurses. We also met the doctor. I went to the car to get her Tumble Forms chair so she could sit in that instead of laying in bed the entire time. When I got back, they were attaching the leads to her head. She was not excited about it at all! The glue that they use stinks like nail polish remover and as you can imagine, it is pretty challenging to work around Emily's hair. As they attach each lead, they use a device that looks like a suction tube to dry the glue on each lead. It is loud and it freaked Emily out.
When they finished, the tech wrapped gauze around Emily's head to keep the leads in place. The gauze only lasted about 2 minutes. She was moving around quite a bit and it came off. So she spent the rest of the night with just the leads and no covering. We had no issues with the leads coming off so I guess all that stinky glue did it's job! During the EEG, they give us a button to push if we saw any seizure activity. It basically marks the report so the doctors can look at that specific spot of the EEG and determine what was going on in her brain.
She did fairly well for the first few hours. We played some of her DVD's, she took a few quick naps and she was pretty content. She normally goes to bed around 8 so we got her pump set up and started to turn off the lights in the room. That is when she started to have a reaction. Her entire body was stiff and her arms and legs were up in the air. She also reached out and grabbed at our hands. The reaction looked similar to her startle reflex, but we pressed the button anyway just to be sure. She had this reaction from about 8 to 8:13. It was not constant, but repeated movements. Once she calmed down, she went to sleep for a while.
Mike and I tried to squeeze onto a couch that looked much like a really wide chair. It folded out, but was the most uncomfortable thing we have ever been on. Emily only slept for a few hours before she woke up crying. That was her pattern for most of the night. A little bit of sleep and lots of crying in between (well, really it was more like whining). I eventually got in bed with her. It took me about 40 minutes to calm her down, but she finally went to sleep. She slept for about 20 minutes and then woke up crying because Mike had started snoring. It was around 4am and I was starting to have some violent thoughts. Lucky for him, we were on video constantly, so the odds of me carrying out any of these violent thoughts were slim to none. Although, when I threw a pillow at him, it did make Emily laugh.
She didn't get very much sleep all night long (and neither did I). She kept jumping at every single noise she heard. We had a really loud neighbor who spent a lot of time crying. The rooms were not very sound proof so you could hear everything that went on in the hall and in the rooms next door. I couldn't get annoyed about our crying neighbor - all I could do was pray for his parents. That must have been very stressful for them! I wished that I could put ear plugs in Emily's ears just so she could get some sleep. The poor kid was exhausted.
They came in just before 8am to remove the leads and go over our discharge instructions. Emily didn't seem to be any more excited about having the leads removed as she was about having them attached. By this time, she was so exhausted she could barely cry. It was pitiful, actually. We got her dressed and headed on our way.
When we got home, we fed her and put her to bed. I ate some breakfast and took a nap myself. Mike had to go to work. Emily and I had a pretty mellow day. I gave her a bath after she had lunch and tried to get the rest of the glue out of her hair. I didn't do a great job, but at least I made progress. When Mike got home, Emily was happy to enjoy some time with him (she is a Daddy's girl!). At around 7:30pm, I noticed that Emily was having a seizure. She was sitting on Mike's lap, her eyes were closed and her body was pretty stiff. She would let out a little cry every few seconds or so. She would not respond to us calling her name. All in all, the seizure lasted about 3 minutes. That is the longest seizure we have seen lately.
Have I mentioned that I hate seizures? I really do hate them. I was also frustrated that we just spent the night in the hospital and didn't see any seizures. No, the seizure happens at home almost 12 hours after the test was over. UGH! I will contact the neurologist's office this week to let them know about the seizure and to get the results of the EEG. The results may not be available for a week or so, but I want the doctor to be aware of the seizure activity. We will see what the doc wants to do about Emily's meds.
We were all pretty happy to sleep in our own beds last night. Thankfully, we have not seen any seizures since last night. We are praying that continues to be the case.