Monday, March 29, 2010

Update on Little D





Thanks so much to those of you who have been praying for and asking about Derek with his recent seizures. I thought I'd post a little update here.


~


On March 2, we took him to Albany to see a Pediatric Neurologist. Our area does not have pediatric specialists, so unfortunately we have to make the hour plus trip to Albany to a large teaching hospital in order to get that care. But we were very happy with the specialist we saw, and she really helped us to better understand what is going on in a seizure and what we can best do to help him be safe in the event of any more seizures. His last one was at the beginning of February, and he has been doing great since then. His doctor in Albany did not like the fact that the EEG that was done up here after his first seizure was done with sedation. She felt that it could have an adverse effect on the results, and since the sedation really didn't work (he woke up before the technician even finished putting the electrodes on his head, and was awake during the test rather than sleeping), she ordered a sleep-deprived EEG for him to be done in Albany.


~


Now, as any mother could guess, sleep depriving a 3 year old is the last thing you want to do! But we did ok. We kept him up until 12:30 am, and got him up at 6:30 am. He was pretty chipper and didn't try to go to sleep at all before we left at 9am for Albany. In the midst of getting ready, Ben discovered the refrigerator had quit working and was quickly trying to get everything over to my mom's house, in our down stairs freezer, and in a cooler. We got out of the house on time though and I determined I wasn't going to worry about the refrigerator right then. That's big for me, because I'm a worrier! I figured God knew all about it, and I couldn't take anymore stress that morning, especially in my sleep deprived state, so I tried to put it out of my mind.


~


We had only been on the highway or a few minutes when I heard Derek make a snorting noise. I thought he had fallen asleep on me. I was sitting next to him and I turned to tell him to wake up, and my heart jumped out of my chest. His lips were purple and his face was pale. I thought he couldn't breathe. I yelled to Ben and he pulled over. Then I noticed the other signs of a seizure and realized that was what was happening. This was the first time I had seen him convulse, so it was pretty upsetting. It lasted only a few minutes, and being that he was in his car seat he was protected. We got back on the highway, but unfortunately Derek fell into a very deep sleep immediately after the end of the seizure. This post-dictal stage seems to last about an hour for him. I could not get him to wake back up, and we were not supposed to let him sleep until they started the test at 10:45. After many minutes of trying to wake him, I realized it wasn't happening and let him sleep. By the time we got to the hospital (late...we missed an exit and had to back track...we are not city drivers!), he woke up and was slowly getting back to his normal self. I called ahead and told them that he had a seizure and was sleeping, and they understood that, so we went ahead with the test. They were not surprised that he had a seizure, apparently sleep deprivation can trigger them.


~


Thankfully he was tired enough to go back to sleep. In fact he fell asleep while the technician was still putting the electrodes on his head, which is a time-consuming process. We were really pleased with the technician and how he worked with Derek. Instead of laying him on a bed, they had me sit in an easy chair with Derek laying across my lap and his head on a pillow. It made him feel more at ease, allowed me to help keep him still and made him more comfortable and snuggly to go to sleep. He was in pretty deep sleep during the test (so was Daddy!), and we had to work to wake him for the last part when they made him look at a flashing light for several minutes. Once the test was done, he perked right up and was talkative and wanted to go to Friendlys for lunch and ice cream. He did such a good job, I was so proud of him. I'm sure having a test done like that when you're so little can be pretty scary, but he was pretty brave. I saw a big difference in his response to it this time than the previous EEG. I was so thankful for their experience working with kids and making it as "un-scary" as possible. I did enjoy the quiet moments there in the darkened room just watching him sleep so peacefully. Those kind of moments pass so quickly when they become toddlers. His long eyelashes were resting on his pink cheeks and he looked like an angel. Well, except for the wires all attached to him and the gauze wrapped around his head!


~


We got out of Albany about 1pm, and we drove up the highway a bit before stopping at Friendlys for lunch. Ben and I decided this was the first time we had ever been out to a meal just the two of us with Derek. We had fun, and he was soaking up the time with just mom and dad. He got the ice cream we promised him and that made his day. I think he wants to go back to the hospital again. :-) On the way out of Friendly's he stopped by the doorway to the kitchen and told one of the ladies, "Thanks for the hot dog and ice cream. It was good!"


~


We are awaiting a call from the doctor to tell us the results of the test. We'll keep you posted. Thanks again for all the concerns and prayers on his behalf. It is a frightening thing to see your child in the middle of a seizure and to not know what is causing them, and to know that you can't do anything for them, other than try to keep them safe. His seizures do not surprise God though, and for that I am grateful. God does not panic and fret and fear (unlike me). He calmy controls the situation and calms His daughter (if I will just allow Him to). And besides these few seizures in the last few months, Derek is a very healthy normal little boy, so we have much to be thankful to God for.

No comments: