Our plan was to spend this week in Rhode Island visiting family and friends. We left on Friday morning at 5am. The drive itself went fine, but Emily did not enjoy the ride. She did well for the first half of the trip, but by the second half, she had decided she was DONE with the car! She was exhausted but could not get to sleep, so she decided to cry about it. We stopped several times to comfort her and get her comfortable, but after 30 minutes on the road, she would start crying again. She was trying so hard to go to sleep. Every time she would start to doze off, we would hit a bump or a loud car would go by and she would start crying all over again. We finally decided we were just going to have to keep driving and let her cry. Needless to say, we were all on edge! We finally arrived at my sister Lisa’s house around 11:30pm.
After 18 hours in the car, we thought Emily would go right to sleep, but that was not the case. She seemed really jumpy and nervous. I figured it was the stress of the day plus the new surroundings, new noises, etc. I sat with her, rocked her and held her hands until she finally started to drift off at around 1:30am. We thought she would sleep late the next day, but she woke up at 7. We tried to give her 2 naps that day, but we aren’t sure how much she actually slept. I do know she fell asleep for about 20 minutes at my friend Theresa’s house. Overall, she was pretty good that day – happy, cheery and sociable.
When we put her to bed on Saturday night things started to unravel. I put her down at around 9. At home, I normally put her in bed, pray with her, sing to her, turn on her mobile and leave. Even if she doesn’t go to sleep right away, she is pretty content to entertain herself for a bit. Instead, she ended up crying for 2 hours straight. She eventually fell asleep on Mike’s lap and then he had to transfer her to the bed (she was sleeping on a crib mattress on the floor). Again she woke up at 7 on Sunday morning. At home, she normally goes to bed at 9 and gets up at 8 or 8:30. So we figured the short nights were going to come back to haunt us, we just didn’t know how quickly that would happen.
We tried to feed her and get her ready for church and that is when things went down hill yet again. She had another 2 hour crying fit. She also started to have seizures. We tried everything we could to get her to calm down, but had no luck. We finally put on her coat, wrapped her in a blanket and walked her around the block. That is what finally calmed her down (and us too). Mike and I talked about what we thought was going on with her – there were so many possibilities. It would be so much easier if she was verbal and could tell us what was going on! We weighed a few options and came to the conclusion that we had to go back home. We decided we would leave the next day to drive back to Kentucky.
That was a tough decision to make. On Saturday, I visited my friend Theresa for a couple of hours. We spent the rest of the night with my sister Lisa and her family and my dad. That meant there were a lot of people that we hadn’t seen yet. We were spending Sunday with Mike’s family, but we hadn’t even seen my sister Christine or my mother. We knew that there were people that would be very disappointed that we were in town but not able to stay and visit with them. And we were pretty disappointed because we were looking forward to that time together. It was a pretty stinky situation!
My biggest struggle with all of this is that I had a feeling before we went to RI that Emily would not do well on this trip. Ever since her seizures in October, when she was put on Depakote, she has not been the same. She has been more irritable. She has been more sensitive to stimulus. She has not been her usual easy-going self. So I had some concerns about how she would handle a long car ride and lots of running around visiting family and friends. If these trips wear us out, how would she react? Unfortunately I chose to ignore those feelings and take her on this trip anyway.
So I feel partly responsible. I feel like I should have known better. I am frustrated that I did not trust my instincts. I feel like I made a selfish decision instead of thinking about what was best for Emily. I could say that I was being optimistic about how she would respond, but if you know me, you would know that I am not an optimistic person. I am definitely a “glass is half empty” kind of girl!
This trip brought back flashbacks of our trip to Florida. Emily was fine all day long, but when we would try to put her to bed she became a different child, very similar to her reaction to the trailer in Florida. Also, when Mike was asked to work the youth camp in Florida, he asked me if I wanted to go along with Emily. I didn’t think that we should go, but I ignored that feeling then too. If you remember how that trip turned out – you might see why I am beating myself up a little bit today. I just wonder when I will start to trust my instincts. When will I learn to trust the decisions that I make for Emily? Maybe this experience is a wake up call for me and I will start to trust myself more.
We left Rhode Island at 6:30am Monday morning and arrived back home at about 12:30am. Emily did better on the ride home, but still had some crying fits. We also had one scare with the car. Mike dropped us off at McDonald’s while he went to get gas. We sat near a window and I started to feed Emily. As Mike pulled into the parking lot, I could see green stuff pouring out of the front of the car (flashback anyone?). It turned out to be pretty minor – a disconnected hose. He was able to reconnect it, fill up the radiator and the car was fine the whole way home.
Emily is still adjusting to being at home. I think the events of the last few days have taken its toll on her. The decision to come home was the right one – I firmly believe that. I am hoping that she can get back to herself in the next few days as she catches up on her sleep and gets back into her normal routine. I spoke with our doctor’s office just now. We are not going to make any changes to her meds for at least a week. The nurse practitioner believes the sleep deprivation and the change of environment could have caused her seizures so she wants us to see how she does at home before we make any changes. If we still see seizure activity in the next week, we will most likely increase her Keppra a bit more. Once that is squared away we will start weaning her off Depakote. We also talked about scheduling a 24 hour EEG. Mike and I would feel more comfortable getting this test done. She has so many behaviors that we wonder about and it will be good to know if those things are seizures.
Our plans for the week fell by the wayside. We are not happy about that, but we are focused on doing what is best for Emily right now. A quiet week at home might be just what she needs.