It's been a busy summer in our house so needless to say, I've not had much time to blog. Last month, we took Kennedy on her first vacation and went to Gulf Shores. It was definitely a fun time and we enjoyed seeing Kennedy's face the first time she saw the beach! She was overwhelmed and SO VERY excited! We returned to celebrate Kennedy's 7th birthday on June 13th. Where does the time go?? We had a small cookout at our house with some friends and she had a great time celebrating her big day. She even made her own birthday cupcakes at her request! Talk about an independent little girl! :)
After returning from the beach, it was a difficult time for me as I began to think about Kennedy going to 1st grade. Everyone has told me it's such a big jump from Kindergarten to 1st grade and I'm just worried about Kennedy. You'd think over time I could get used to the fact that things don't come as easily for Kennedy as they do for other kids and yet, I constantly go through the vicious grief cycle over and over and over and over...... it never stops. I could go into specifics on this, but I'm just not quite ready to throw it all out there into cyber space. Let's just say, I found a fabulous friend who has let me cry, vent, and complain to her and I am so very thankful for her.
Last week, Kennedy went for a check up at Vanderbilt and had a great visit. She had been taking two different seizure medicines, Keppra and Depakote, three times a day, but because her seizures were starting to slow down (1 year since a complex partial seizure!), they decided to switch her to the Depakote Sprinkles (which are given twice a day) and stop the Keppra completely--- all depending on her blood work they drew that day. So we go to the lab and Kennedy hopped up in the char, refusing my mom or myself to sit down first so she can sit in our lap. She's 7 now, so apparently she doesn't need to sit in anyone's lap for comfort. However, she did scream a bit when she was poked, but quickly calmed herself down once she saw the purple butterfly band aid they offered her. lol
On Monday, I called for the results and was told that her Depakote levels were great so they wanted to switch her to the Depakote Sprinkles so that she only has to take medication twice a day. The nurse also told me to stop the Keppra completely the same day. Okay, now we've had lots of medication changes in our 6 1/2 years of seizures, but never have we stopped a medicine cold-turkey. But I figure the doctor knows what he's doing, although he wanted to take her off the Keppra which was the only medication that had controlled her complex-partial seizures for the last year. The Depakote had only been added to her list of medication because of her absence seizures (which basically means she spaces out for a few seconds and then is back to good). So Monday night, we began the new medication regimen.
This morning around 10:30, I received a call from the sitter on the church phone. I knew Kennedy was going to jump in the bouncy house at church this morning, but I knew that something was wrong-- I just felt it. The sitter told me that Kennedy had apparently had a seizure and needed to know what to do. Because Kennedy's seizures change so often, I immediately went to the church to find Kennedy laying in the floor, still having a seizure. Grand total of about 7 minutes. I decided to take her to the emergency room at Greenview to have her checked out because even in the past, she's never had a seizure to last that long. And I find it very hard to believe that she just HAPPENED to have a seizure two days after we stopped taking the Keppra--which was the medicine that actually worked!
So....we go straight through to an exam room in the ER and they immediately wanted to do blood work so that they could check the Depakote level in her system. Kennedy was so out of it, she cried a little, but for the most part didn't really care what the nurses were doing to her. Fortunately, Kennedy's wonderful nurse used a tub that could be left in her arm in case they needed more blood or needed to give her medication. That came in handy when Kennedy began vomitting and filled up 3 or 4 pans of vomit in a matter of seconds. Poor little thing kept saying she felt she needed to throw up and kept covering her little mouth to catch the vomit. Gross?--yes, pitiful?--definitely! The doctor immediately ordered some phenegran for her belly and they hooked it up through the IV in her arm. Not long after they started the medicine, she was sound alseep. The doctor attempted to get in touch with Vanderbilt for 2 hours without a call back so they released us to go home and told me that Vanderbilt would be calling me regarding the medicine.
When they began to remove Kennedy's IV, she looked up at the nurse and said in the tiniest voice, "Don't hurt me!" I felt so bad for Kennedy. By this point, she had life coming back to her eyes and asked me where she was. Apparently she didn't remember anything except being in the bouncy house this morning. We left the hospital and Jeremy went to pick up some lunch because we were starving and Kennedy and I driving home when she looked at me and said "I think a Happy Meal would make my belly feel better." I know she had been sick, but I just could not turn it down. She could have asked for anything at that point and I would have given it to her. So Jeremy also picked her up a Happy Meal. She ate two nuggets, drank some sprite then layed down in my bedroom for a while. About an hour ago, she came into the living room and started to become very chatty.
I finally got a call back from Vanderbilt and was told to increase the Depakote sprinkles from 2 pills to 3 pills twice a day. I argued with the lady that I'd prefer to have her back on Keppra because that was the only medicine that has controlled these types of seizures. She said she could send the doctor a note, but that this was what he wanted to do. I don't think those people understand that I can deal with giving medicine 3 times a day (they are the ones that are convinced giving meds twice a day will be easier) if it means she won't have these seizures. She can have absent seizures and we'll deal with it because she bounces back in a few minutes. Complex partial seizures take her at least one day to recover if not two days. We cannot be having these when school is back in session. But the nurse from Vanderbilt told me to call in a week with a report and to give it about a week for her to be seizure-free. Seriously?? That's not good enough for me. I am so utterly irritated with them right now, but I am thankful that Kennedy is starting to perk back up. Guess we'll just have to wait and see what happens--and send up LOTS of prayers that Vanderbilt will get these seizures under control ASAP!
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