Sunday, February 7, 2010

the adventure continues

i had mentioned awhile back that kaiya was having episodes that we thought were seizures. we had an EEG this past wednesday. my parents took her because i had to work, and when they got home there was already a message on the answering machine - the hospital asking me to call the neurologist right away. so i gave them a call and they wouldn't give me any information, they just said the neuro wants to see her as soon as possible, the next day if we could make it. in my past experiences it has always taken at least a month to get in to see a neurologist so i was pretty concerned that they were making room for us right away. i took off of work so i could take her myself. we showed up at the hospital 45 minutes early, which proved to be a smart choice b/c we had to fill out a bucketload of paperwork and they told us the doc was running behind, but since i got my name in early we were actually seen at our appointment time (that has never happened at this hospital!) we go to the room, the nurse takes her measurements, and she tells us the doc will be with us in a minute. this guy walks in with a chart, says "akaiya?", i nod, and he goes on to say "she's 7 and trisomy 18? they don't usually live that long do they?" all i'm thinking in my head is, "hi, i'm kelly, nice to meet ya." so he starts going on with his exam - and i realize that he didn't want to see her right away because she was in serious peril, he wanted to see her right away because he thought she was some type of oddity being 7 years old with t18. now, i know the correct response from me would have been to embrace the situation and educate this person...but that wasn't where i was at mentally. i thought my kid was about to be admitted to the hospital and they were going to tell me that she required some crazy surgery or worse...his attitude totally shut me down. so instead of asking the pertinant questions, i was just nodding and giving him basic replies to his t18 questions. basically, he said that she had an abnormal EEG. he asked me to describe the episodes b/c she didn't have one during the test. he then told me that he was prescribing depakote. i am not the biggest fan of giving medication...and i didn't ask all the questions i should have - like what type of seizures she's having and what are the effects of the meds...he did say the meds might make her tired. i guess those are the types of things i'll be asking at her follow-up in a couple of weeks. we started 2 ml of depakote 2x/day each week we have to add another ml till we get to 4 ml 2x/day. she seemed a little sleepy on saturday, but today she has been awake all day long, and is still partying in her bed as i write this...she's not the best at taking her meds, kind of spits them back at me, but hopefully she will start to like it.